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  • Participatory action research to pilot a model of mental health service user involvement in an Ethiopian rural primary healthcare setting: study protocol
    Res. Involv. Engagem. (IF 0) Pub Date : 2020-01-08
    Sisay Abayneh; Heidi Lempp; Charlotte Hanlon

    Involvement of service-users at all levels of the mental health system is a policy imperative in many countries internationally. However, putting policy into practice seems complex; little is known about how best to involve service users and efforts are often criticized for being tokenistic. In low-and-middle income countries, less attention has been given to the roles of service users within mental health systems. The proposed study is part of a larger project intended to develop service-user involvement in mental health system strengthening in Ethiopia. A Theory of Change (ToC) model has already been developed through a participatory approach. This study protocol aims to describe the theoretical background and methods to pilot this model using participatory action research (PAR) and explore participants’ experience of involvement. The proposed study will apply a PAR approach situated in critical social theory and conduct a phenomenological case study to find out participants’ experience of involvement. This will be conducted in three stages. The focus of Stage 1 will be to(i) establish a Research Advisory Group (RAG), and Research Participant Group (RPG) at district and primary healthcare facility levels, respectively, and (ii) identify and prioritize potential areas of concern for involvement in the domains of advocacy, service planning and development, monitoring and improving service quality. In Stage 2, we will work with the RPG to develop a plan of action for the selected area. Stage 3 will aim to assist the RPG to implement and evaluate the plan of action. Process indicators and observation will be combined with in-depth interviews with participants to elicit their experiences of involvement. Thematic content analysis will be used. The participatory approach to mental health service user involvement in health system strengthening employed by this study will support the implementation of solutions through locally relevant and contextualized actions. Findings from this study will contribute to the body of knowledge towards understanding the complexity of implementation of service user involvement and refine the ToC model for transferability to similar settings.

    更新日期:2020-01-08
  • Learning from patient involvement in a clinical study analyzing PET/CT in women with advanced breast cancer
    Res. Involv. Engagem. (IF 0) Pub Date : 2020-01-06
    Marianne Vogsen; Susanne Geneser; Marie Lykke Rasmussen; Mogens Hørder; Malene Grubbe Hildebrandt

    Despite increasing interest in patient involvement in health care research, researchers may be uncertain about the benefits of involving patients in the design and conduction of clinical studies. We aimed to evaluate the impact of patient involvement on patient recruitment and retention in a clinical study of PET/CT in women with advanced breast cancer. Further, we report our experience regarding the researchers’ attitudes towards involving patients as partners in the research process. Two patient representatives from the Danish Breast Cancer Organization were invited as partners in the research team. These patient partners were asked to contribute in particular to participator information material and evaluation of ethical aspects of the study. The impact of patient involvement on patient recruitment was evaluated by comparing expected versus actual number of patients recruited, and then relating it to patient recruitment in a similar study at the same institution that did not involve patients as research partners. Having patients as partners in the research team led to a major revision of the participator information material and improved patient recruitment. The expected number of patients was 260, but 380 were actually enrolled within the planned study period, thus 146% of the expected patient recruitment. In the previous study, only 100 of the expected 150 patients were enrolled during a 10-month extended study period, i.e. 67% of the expected number. Patient retention in the current study was high, with 86% of eligible patients attending follow-up scans. We observed initial resistance amongst researchers against inviting patients as team partners. This resistance gradually lessened during the study, and the most reluctant researchers at the beginning of the study later applauded the collaboration and the ideas generated by the patient representatives. Involving patients as partners in the research team resulted in major changes to the participator information material and contributed to higher than expected patient recruitment and retention. Furthermore, we observed a positive change of attitude amongst the researchers towards patient involvement in the research process. Ongoing study: ClinicalTrials.gov (NCT03358589). Previous study: ClinicalTrials.gov (NCT01552655).

    更新日期:2020-01-06
  • Patients’ and researchers’ experiences with a patient board for a clinical trial on urinary tract infections
    Res. Involv. Engagem. (IF 0) Pub Date : 2019-11-28
    Imke Schilling; Heike Behrens; Jutta Bleidorn; Ildikó Gágyor; Claudia Hugenschmidt; Hannah Jilani; Guido Schmiemann; Ansgar Gerhardus

    Patient and public involvement (PPI) has become an essential part of the design, conduct, and dissemination of research. While researchers who employed PPI mainly report on the positive aspects, in practice PPI is still an exception in clinical trials in Germany. There are specific challenges in the process of involvement that can jeopardize the conduct of involvement. The aim of our study was to analyze the experience of patients and researchers with PPI in a clinical trial in Germany, so we could learn more about potential challenges and how they could be addressed. We established a patient board for a randomized controlled trial on urinary tract infections, where patients and researchers regularly met to discuss relevant aspects of the trial. Minutes were taken for each meeting and the moderator also noted her observations in a postscript. After four meetings, we conducted two focus groups, one each with the patients and researchers. We analyzed and categorized the minutes, postscripts, and focus group transcripts using thematic qualitative text analysis. Patients and researchers felt comfortable with the composition of the patient board and its’ atmosphere. In terms of challenges, patients and researchers needed time to get familiar with PPI. Both parties saw a need for training in PPI but differed in their views on the relevant topics. Patients wished to learn more about their role and tasks within the board at the onset of the PPI. They also preferred to meet more frequently and get more intensely involved in the trial. In contrast, researchers perceived that they were already highly involved. They further felt that the involvement was of benefit to them, the trial and future research. Patients described benefits for themselves, but also wondered if their involvement had had an impact on the trial. To facilitate effective PPI, resources, adequate structures, and training are needed. Patients and researchers need to agree on their respective roles, training needs, and the mode of cooperation right at the beginning. The parties involved should continuously reflect on the actual benefits of PPI, describe them explicitly and make them transparent for all.

    更新日期:2019-11-29
  • Use of Photovoice to engage stakeholders in planning for patient-centered outcomes research
    Res. Involv. Engagem. (IF 0) Pub Date : 2019-11-28
    Jill D. Nault Connors; Marshall J. Conley; Laura S. Lorenz

    Research is needed to inform patient and provider decisions about how to best care for patients who go to the emergency department with complaints of chest pain when their symptoms are due to anxiety rather than a heart problem. However, this research may not be a high priority due, in part, to a lack of awareness for the severity of anxiety symptoms and the impact of anxiety on peoples’ daily lives. In this commentary article, we highlight the use of Photovoice as a unique method to share patients’ lived experience of anxiety with providers, researchers, and health system leaders. A brief background on Photovoice methods, the process of patient partner involvement in Photovoice, and the project’s Photovoice results (posters, photos and captions) is presented. Photovoice achieved its intended effects of increasing awareness of all stakeholders about the burden of anxiety in patients’ lives and the imperative of improving emergency department care for anxiety. This resulted in increased participation in a multi-stakeholder research partnership, critical health system support that included costs to the health system associated with implementing interventions to be tested, and submission of a patient-centered outcomes research proposal that is currently under review. In addition, Photovoice had positive benefits for participants including a therapeutic effect, may have increased group cohesion, and empowerment of patients as partners in the research process.

    更新日期:2019-11-29
  • Overcoming barriers to the involvement of deafblind people in conversations about research: recommendations from individuals with Usher syndrome
    Res. Involv. Engagem. (IF 0) Pub Date : 2018-10-26
    Andrew Skilton; Emma Boswell; Kevin Prince; Priya Francome-Wood; Mariya Moosajee

    Usher syndrome is the most common cause of deafblindness worldwide and is estimated to affect between 3 and 6 people in every 100,000. Children are born with hearing loss and develop sight loss in their early years of life. A barrier to the involvement and participation of deafblind people in research is access to information in appropriate formats. The degree of sight and hearing impairment experienced by individuals is variable, so there is not a one size fits all solution. We held a research discussion group, that included five people with Usher syndrome, to consider people’s accessibility needs for an upcoming research project involving this condition. We have identified a number of considerations for including deafblind people in conversations about research: i) using appropriately sized meeting rooms which offer control over lighting, layout and sound; ii) where appropriate, ensuring written/printed materials are high contrast (e.g. black text with a yellow background) and in large (18 point and above), sans-serif fonts (e.g. Arial); iii) identifying the relevant communication support for the individual whether that be sign language interpretation, lip reading, hearing loop, speech to text reporting or a combination; iv) ensuring that there is access to emotional support for both people who are deafblind and their families before, during and after the research. The outcome of this work is a checklist of considerations when planning to hold a research conversation with someone who is deafblind and hinges on earlier interactions to identify the appropriate support needs for the individual. Background Usher syndrome is the most common cause of deafblindness worldwide. Children are born with hearing loss and develop sight loss in their early years of life. It is estimated to affect between 3 and 6 people in every 100,000. A barrier to the involvement and participation of deafblind people in research is access to information in appropriate formats. Individuals have varying degrees of sight and hearing impairment meaning there is not a singular solution to supporting all people’s communication needs. There is evidence that severe sight and hearing impairments are used as exclusion criteria in some research studies. This exclusion may extend into involvement activities. Methods Eight people, including five people with Usher syndrome, attended a research discussion group. Through this activity, we identified what to consider when looking to improve the experience of taking part in a discussion about research for deafblind individuals. Results Among contributors two people made use of standard British Sign Language interpretation and one communicated using hands-on signing. Contributors highlighted the limitations associated with signing and lip reading such as exhaustion and clear lines of sight as well as the need for additional formats such as speech to text reporting, and high contrast (e.g. black text with a yellow background) printouts with large (18 point and above), sans-serif fonts (e.g. Arial). A large proportion of discussions were on the importance of wrap around emotional support for people who are deafblind and their family throughout the research pathway. This includes counselling, peer support and sensitive and mindful facilitators of involvement activities. Conclusions The range and specific nature of the communication methods and support offerings that deafblind people depend on are broad and require researchers and involvement practitioners to reach out to deafblind contributors earlier on, in order to appropriately tailor approaches and put the most suitable support in place. Informed by this discussion group, we have developed a checklist of key considerations to support the inclusion of deafblind individuals in research conversations, supplemented with input from the sensory disability charity Sense.

    更新日期:2019-11-28
  • Reflections and experiences of a co-researcher involved in a renal research study
    Res. Involv. Engagem. (IF 0) Pub Date : 2018-10-29
    Sue Marks; Elspeth Mathie; Jane Smiddy; Julia Jones; Maria da Silva-Gane

    Patient and Public Involvement (PPI) is seen as a prerequisite for health research. However, current Patient and public involvement literature has noted a paucity of recording of patient and public involvement within research studies. There have been calls for more recordings and reflections, specifically on impact. Renal medicine has also had similar criticisms and any reflections on patient and public involvement has usually been from the viewpoint of the researcher. Roles of patient and public involvement can vary greatly from sitting on an Advisory Group to analysing data. Different PPI roles have been described within studies; one being a co-researcher. However, the role of the co-researcher is largely undefined and appears to vary from study to study. The aims of this paper are to share one first time co-researcher’s reflections on the impact of PPI within a mixed methods (non-clinical trial) renal research study. A retrospective, reflective approach was taken using data available to the co-researcher as part of the day-to-day research activity. Electronic correspondence and documents such as meeting notes, minutes, interview thematic analysis and comments on documents were re-examined. The co-researcher led on writing this paper. This paper offers a broad definition of the role of the co-researcher. The co-researcher reflects on undertaking and leading on the thematic analysis of interview transcripts, something she had not previously done before. The co-researcher identified a number of key themes; the differences in time and responsibility between being a co-researcher and an Advisory Group member; how the role evolved and involvement activities could match the co-researchers strengths (and the need for flexibility); the need for training and support and lastly, the time commitment. It was also noted that it is preferable that a co-researcher needs to be involved from the very beginning of the grant application. The reflections, voices and views of those undertaking PPI has been largely under-represented in the literature. The role of co-researcher was seen to be rewarding but demanding, requiring a large time commitment. It is hoped that the learning from sharing this experience will encourage others to undertake this role, and encourage researchers to reflect on the needs of those involved.

    更新日期:2019-11-28
  • Stakeholder involvement in health research priority setting in low income countries: the case of Zambia
    Res. Involv. Engagem. (IF 0) Pub Date : 2018-11-05
    Lydia Kapiriri

    While there is increasing recognition of the importance of stakeholder involvement in health research priority setting there is a paucity of literature reporting on stakeholder involvement in health research priority setting in low income countries. This paper fills this gap by identifying and discussing the roles and legitimacy of different stakeholders (including the public and patients) involved in the health research priority setting process in Zambia; identifying the barriers to public participation and proposing improvement strategies. We interviewed 28 policy makers and practitioners who had participated in the national level health research priority setting in Zambia. Reported participants in health research priority setting included research users, researchers, research funders and the community/ public. Research funders were thought to have undue influence while the public and patients were not effectively involved. This could be due to the public’s lack of education, lack of resources to facilitate public involvement and limited skills to meaningfully engage the public. Participation of people from rural areas, women and young professionals was also limited. While there is a commitment to broad stakeholder involvement in health research priority setting, there’s limited public/patient involvement. Public education, availing more resources, and skills to meaningfully engage the public need to be explored. The undue influence of research funders should be mitigated and incentives availed to ensure that they align their research funding with the national priorities. These efforts would strengthen meaningful stakeholder engagement in health research prioritization within Zambia and other similar contexts. Background Stakeholder involvement in health research priority setting contributes to the legitimacy and acceptability of the priorities. Hence legitimate priority setting should involve a broad representation of stakeholders including the public. While there is a growing body of literature on health research prioritization in low income countries, there is a paucity of literature reporting on stakeholder involvement in the process. The objectives of this paper are to; 1) identify the stakeholders who were involved in the health research priority setting process in Zambia; 2) discuss the roles and perceived legitimacy of the stakeholders and analyze the degree to which patients/ public was involved; 3) To discuss some of the barriers to stakeholder participation in Zambia and similar contexts and to propose improvement strategies. Methods This was a qualitative study involving 28 in-depth interviews with stakeholders who had participated in the national level health research priority setting exercises in Zambia. An interview guide was used. Audio recorded interviews were transcribed and analyzed using INVIVO 10. Analysis of the Stakeholders’ theme involved identifying the different dimensions of stakeholder involvement as discussed in the interviews. Results Identified stakeholders included; research users, researchers, research funders and the community/ public. We found that health research priority setting involved research users, researchers, research funders and the community/ public. However, research funders were thought to have undue influence while the public and patients were not effectively involved. While the respondents recognized the advantages of involving the public and patients, they were not effectively involved. This could be due to the public’s limited understanding of the technicalities of priority setting, lack of resources to facilitate public involvement and limited skills to meaningfully engage the public. Participation from rural areas, women, and young professionals was also limited. Conclusions While there is a commitment to broad stakeholder involvement in health research priority setting, the public is left out. Efforts such as public education, availing more resources, and skills to meaningfully engage the public need to be explored. The undue influence of research funders should be mitigated through their direct involvement in the prioritization process and incentives to ensure that they align their research funding with the national priorities. These efforts would strengthen meaningful stakeholder engagement in health research prioritization within Zambia and other similar contexts.

    更新日期:2019-11-28
  • Diversifying audiences and producers of public involvement in scientific research: the AudioLab
    Res. Involv. Engagem. (IF 0) Pub Date : 2018-11-12
    Bella Starling; Jemma Tanswell

    A partnership between a public engagement specialist, and a director of a digital radio station working towards social change, The AudioLab is a creative and innovative way to support diverse young people to connect with and get actively involved in health research. We worked with 25 creative young adults at relative socioeconomic, educational and/or health disadvantage in 2016 and 2017. Facilitated by the project leads, the emerging young talents connected with science in a series of culturally- and personally-relevant and creative sessions, culminating in their production of digital content and a one-hour live radio show, which reached at least 2324 people online. As a result of taking part in The AudioLab, the young adults felt more confident about themselves and about science; they could see a role for their creative talents in science communication, and felt able to become actively involved in health research. After the project, the ongoing partnership between the project leads and the young adults helped 12 of the participants to progress to employment, training and voluntary roles within health, research, creative and communications environments. We believe that the AudioLab presents a way of working that takes a step towards greater diversity and inclusion among both the audiences and producers of public involvement in health research. It has the potential to be reproduced as a method in other locations. Background The AudioLab is an innovative way to support greater inclusion in public engagement and involvement in health research. A partnership between a public engagement with research specialist, and a director of a digital radio station working towards social change, The AudioLab piloted an approach working with young people at relative socioeconomic, educational and/or health disadvantage to engage and involve them meaningfully, and sustainably, with health science and research. Methods Twenty-five young adults from diverse backgrounds took part in AudioLab pilots in 2016 and 2017. Facilitated by the project leads, they engaged with science in a series of culturally-relevant and creative sessions, culminating in their production of digital content and a one-hour live radio show, the latter reaching at least 2324 people online. Results Young adults’ agency within health research and science engagement was increased, with 12 of the participants progressing to roles within health, research, creative and communications environments. Conclusions Through partnership working between the project leads, co-production of creative outputs by the young people with scientists and science communicators, and a ‘reimagining’ of the positive assets that diverse young adults bring to engagement with health research, the AudioLab presents a way of working that takes a step towards greater diversity and inclusion among both the audiences and producers of public involvement in health research. Further, the AudioLab has the potential to be reproduced as a method in other locations.

    更新日期:2019-11-28
  • Opportunities and challenges in public and community engagement: the connected for cognitive health in later life (CHILL) project
    Res. Involv. Engagem. (IF 0) Pub Date : 2018-11-19
    Caroline Lee; Tom Mellor; Peggye Dilworth-Anderson; Tiffany Young; Carol Brayne; Louise Lafortune

    Two goals of public health research are to understand what causes disease and ill health, and what can be done to prevent it. To develop appropriate and effective actions, we need to know what resources are available to communities, and what are the beliefs and values that influence behaviour. This means that research needs to be carried out close to the people it affects, to better understand context and environment, as well as people’s understandings and interpretations of health and health risk. Connected for Cognitive Health in Later Life (CHILL) was a project developed to test whether engaging local residents in research might be a good way of firstly: raising awareness of research findings in the community; and secondly, affecting mid-life behaviours in favour of ageing well and reducing risk of dementia. We investigated perceptions of ageing and how to age ‘well’ in a town whose population health is ranked worse than the regional average. Project activities involved: identifying and engaging with stakeholders; conducting ‘mini’ street interviews; holding community workshops; and taking part in a large community event. This paper describes the process of carrying out the research, and presents a flavour of some of the information captured on context and local understanding of dementia risk. It then goes on to discuss in more depth some of the challenges in attempting to involve people in shaping research and intervention development, before offering some conclusions and suggested next steps for researchers. Background Identifying risk of disease and ill health, and developing prevention strategies, are key objectives in public health research. However, poor understanding of the impact of local context, including cultural and ethnic differences, challenges our ability to develop actions that are acceptable and meaningful to local communities. This suggests a need for research embedded in sub-populations, seeking to better understand context, understanding and interpretation of health and health risk. Methods Against a backdrop of wide inequalities in health, the Connected for Cognitive Health In Later Life (CHILL) project began work in a locality with worse than regional average health outcomes aiming to co-develop a project investigating perceptions of ageing and how to age ‘well’. Another goal was to test the potential for using Community Based Participatory Research (CBPR) as a way of communicating research knowledge, raising awareness and understanding amongst community members of mid-life risk factors for developing dementia. A four-part scoping study was embarked on, including: stakeholder identification and engagement; street interviews; community workshops; and a wider public engagement event. Results Whilst the project was able to stimulate interest, gain involvement from a small group of residents, and successfully engage members of the public, it was not possible, within the relatively short timescale of the scoping project, to achieve the depth of community involvement necessary to co-design and seek additional funding for collaborative research activities. Conclusions A number of challenges were encountered in scoping CBPR on this particular topic and location. Potential explanations include lack of ‘readiness’ or ‘capacity’ amongst the local population, and a very limited timescale for the scoping research to adapt and respond to this. This has significant implications in terms of time and effort necessary to build infrastructure to support research partnerships if researchers wish to engage successfully with members of the public on population health in the future.

    更新日期:2019-11-28
  • A protocol to evaluate the impact of involvement of older people with dementia and age-related hearing and/or vision impairment in a multi-site European research study
    Res. Involv. Engagem. (IF 0) Pub Date : 2018-11-22
    Jahanara Miah; Piers Dawes; Iracema Leroi; Suzanne Parsons; Bella Starling

    Involving older people with dementia in research is increasingly recognised as important to ensure that research is relevant and beneficial for older people with dementia. But researchers need to know how best to involve older people with dementia and to be able to show the benefits of involving older people with dementia in dementia research. This paper describes a research plan to explore the involvement of older people with dementia and age-related hearing and/or vision impairment in a European research project investigating the combined impact of dementia with hearing and/or vision impairment. We set up four Research User Groups (RUGs) of older people with dementia with age-related hearing and/or vision impairment and their carers based in the UK, France, Cyprus and Greece to advise our researchers. We provided training to group members to support their input to the research. We will use a questionnaire and interview people in our RUGs to understand what they thought of the training and their experiences of being part of the RUG. We will also interview researchers to understand if they thought the advice from the groups was useful. This study will help us to understand how to effectively involve older people with dementia and age-related hearing and/or vision impairment in research and what the benefits of involving older people with dementia in research are. Background Research to prevent and treat dementia is an international priority. Involvement of older people with dementia in the research is important to ensure the relevance and utility of the research outcomes in clinical practice to them. Efforts to involve such people in research are growing due to increased recognition of the usefulness of incorporating the views of older people with dementia into the research process. Research User Groups (RUGs) of older people with dementia and carers for people with dementia were set up in UK (Manchester), France (Nice), Cyprus (Nicosia) and Greece (Athens) to advise on the research. We report a protocol for a study which aims to evaluate i) the perceptions of RUG members of the usefulness of Research Awareness Training that was provided to support their involvement in the research and ii) perceived impacts of the involvement of older people with dementia and age-related hearing and/or vision impairment on research from the point of view of RUG members and researchers. Methods Both qualitative and quantitative methods will be used to evaluate the acceptability, appropriateness and satisfaction with Research Awareness Training and the perceived impact of involvement of RUGs on research. Focus groups interviews with RUG members and one to one interviews with both RUG members (n = 24) and researchers (n = 6) will be conducted to understand the perceived impacts of patient and public involvement on research from the point of view of older people with dementia, carers and researchers. Any comparative differences in cultural, attitudinal and environmental differences between RUGs in outcomes of training and impact across the four European sites will be reported. Discussion This study is unique in its exploration of the impact of the involvement of older people with dementia and age-related hearing and/or vision impairment in a large multi-site European dementia research study. This work will be crucial in informing understanding of how to effectively involve older people with dementia and age-related hearing and/or vision impairment and carers in dementia research to ensure research addresses the needs and priorities of older people with dementia and age-related hearing and/or vision impairment.

    更新日期:2019-11-28
  • Fostering the conduct of ethical and equitable research practices: the imperative for integrated knowledge translation in research conducted by and with indigenous community members
    Res. Involv. Engagem. (IF 0) Pub Date : 2018-11-26
    Janet Jull; Melody Morton-Ninomiya; Irene Compton; Annie Picard

    Integrated knowledge translation is a research approach in which researchers work as partners with the people for whom the research is meant to be of use. A partnered approach can support the use of Indigenous ways of knowing in health research that may then be used in health care. This is important as current health care models do not often support Indigenous values, ways of knowing, and care practices. We describe 1) why it is necessary to co-create knowledge that includes the voices of Indigenous community members, 2) how integrated knowledge translation is a way of doing research that includes many views and 3) how integrated knowledge translation can help those involved in research to agree upon and uphold ethical ways of doing research. Integrated knowledge translation may be used to include Indigenous ways of knowing into mainstream health research and to improve health systems. The use of an integrated knowledge translation approach in research may guide researchers to be research partners with Indigenous people and groups. Integrated knowledge translation may be a way to do research that is respectful and to ensure that Indigenous ways of knowing are included in both health research and health care systems. Background Indigenous people are affected by major health issues at much higher rates than for general populations, and Western health care models do not respond or align with Indigenous values, knowledge systems, and care practices. Knowledge translation (KT) describes ways of moving knowledge from theory into health systems’ applications, although there are limitations and concerns related to the effectiveness and contributions of Western-informed approaches to research and KT practices that promote health with Indigenous groups. Integrated KT is an approach to research that engages researchers with the people for whom the research is ultimately meant to be of use (“knowledge users”) throughout the entire research process. Integrated KT is done in ways that knowledge users may define as useful, relevant, and applicable in practice, and may also be viewed as complementary to Indigenous health research principles. Main In this paper, we raise and discuss questions posed to researchers by Indigenous knowledge-users about perspectives on health research, researchers, and research institutions, and focus on the role and ethical imperative for integrated KT in Indigenous health research. We describe: 1) why it is necessary to co-create knowledge that includes the voices of Indigenous community members within institutional academic spaces such as universities; 2) how integrated KT accommodates Indigenous and Western-informed perspectives in community-research partnerships throughout the research process; and 3) how an integrated KT approach can help those involved in research to define, agree upon and uphold ethical practices. We argue that integrated KT as a collaborative research practice can create opportunities and space within institutional academic settings for different knowledges to coexist and improve health systems. Most importantly, we argue that integrated KT in Indigenous research contexts includes Indigenous KT. Conclusion The use of integrated KT facilitates opportunities to further define and develop understandings about collaborative approaches to research with Indigenous research partners and that may contribute to respectful inclusion of Indigenous KT practices and processes within institutional academic settings. In the pursuit of useful, relevant and applicable knowledge, those within Western research and health systems must examine and expand upon collaborative approaches to KT.

    更新日期:2019-11-28
  • Facing Shadows: working with young people to coproduce a short film about depression
    Res. Involv. Engagem. (IF 0) Pub Date : 2018-11-27
    Valerie Dunn; Sally O’Keeffe; Emily Stapley; Nick Midgley

    IMPACT (Improving Mood with Psychoanalytic and Cognitive Therapies) is a multi-centre randomised controlled trial of three therapeutic interventions for the treatment of depression in young people. IMPACT- My Experience (IMPACT-ME), a qualitative research study, followed up a sub-sample of families involved in IMPACT to explore young people’s experiences of therapy and depression. Members of the IMPACT-ME steering group, who brought their own experiences of depression and engaging with mental health services, were keen to find ways to provide information about depression and help-seeking beyond traditional academic audiences, specifically to other young people experiencing depression and wondering where to turn: their chosen medium was film. Here we describe and reflect on the four-day coproduction workshops in which researchers, young people and film-makers coproduced ‘Facing Shadows’, a short animation about depression and therapy ( https://www.youtube.com/watch?v=LdmRPKUhNEY ). We outline the process, focusing on the four-day creative, collaborative workshop in which young people shared their experiences, decided on the tone, tenor and message of the film, identified their primary audience and produced the bulk of the audio and visual material. The adults acted as facilitators: developing a creative, collaborative learning environment in which trusting relationships could flourish, as well as offering guidance, instruction, advice and support. To date the film has been viewed around 12,000 times on YouTube. The young people learned new skills, felt listened to and enjoyed the process. They produced a film which sends a hopeful message to other young people, ‘… that they are not alone’. We reflect on the creative participatory workshop approach which transformed the project from dissemination to an insightful learning experience for young people and researchers alike.

    更新日期:2019-11-28
  • Assessing community (peer) researcher’s experiences with conducting spirometry and being engaged in the ‘Participatory Research in Ottawa: Management and Point-of-care for Tobacco-dependence’ (PROMPT) project
    Res. Involv. Engagem. (IF 0) Pub Date : 2018-12-01
    Catherine B. Charron; Alzahra Hudani; Tina Kaur; Tiffany Rose; Kelly Florence; Sadia Jama; Smita Pakhalé

    This article examines the overall experiences of community researchers in their involvement with the ‘PROMPT’ project for smoking cessation, which targeted community members who were homeless or at-risk for homelessness. More specifically, four community members, representing the study population were involved in the project as researchers. They were asked to complete surveys at both the beginning and end of each research training session to better understand their learning as it related to using a key instrument for this project, a spirometer, to measure project participants’ lung function. Spirometry is typically performed by trained healthcare providers. Community researchers were also interviewed to explore what their experiences were like working as a researcher with their own at-risk community. Although the researchers felt that the training was sufficient, more research is needed to evaluate training effectiveness among community researchers in delivering acceptable quality lung function testing using a spirometer. Upon analyzing the small group discussion and survey results, we found that the community researchers had an overall positive experience with both the project, and the training that was provided to equip them with the knowledge, tools, and resources they needed to successfully work in a research project of this kind. They also faced challenges that are common in such community-based projects, such as the power differential between the researchers with a healthcare background and themselves who have lived experience with the issue at hand. Background The Ottawa Citizen Engagement and Action Model (OCEAM) used a Community Based Participatory Action Research (CBPAR) approach by involving the most at-risk urban population. Community (peer) researchers participated in every step of the study despite the multiple challenges. Objective To assess the community researchers’ training and experiences in a CBPAR project, PROMPT: Participatory Research in Ottawa: Management and Point-of-care for Tobacco Dependence. Method Four community researchers were recruited, representative of the PROMPT project’s target population with current or past poly-substance use; smoking tobacco; and/or being homeless or at-risk for homelessness. The community researchers participated in all phases of PROMPT, including study design, development of questionnaires, participant recruitment, administering consent forms and questionnaires, as well as hand-held spirometry after rigorous training. To assess their knowledge and comfort level with spirometry testing after standardized training, questionnaires were administered pre- and post-training. In turn, to assess their overall experience, interviews were conducted at the end of study completion. Results All community researchers underwent small-group training sessions including presentations, discussions and hands-on practice adapted from standardized training material prepared for health care professionals. Spirometry training was included in all sessions. Self-perceived knowledge and confidence in administering spirometry, as well as skill-testing score averages improved between the pre- and post-training questionnaires. Overall, all the community researchers had a fulfilling experience participating in the project. Conclusion Despite challenges, involving community researchers with lived experience is feasible, satisfying and productive even in the most marginalized populations. Standardized spirometry training of community researchers’ representative of the PROMPT target population, with no healthcare educational background, was feasible and effective in improving knowledge, confidence and readiness to administer spirometry.

    更新日期:2019-11-28
  • “Still learning and evolving in our approaches”: patient and stakeholder engagement among Canadian community-based primary health care researchers
    Res. Involv. Engagem. (IF 0) Pub Date : 2018-12-03
    Claire Kendall; Michael Fitzgerald; Rachel Seoyeon Kang; Sabrina T. Wong; Alan Katz; Martin Fortin; Emilie Dionne; Kerry Kuluski; Mary Ann O’Brien; Jenny Ploeg; Lois Crowe; Clare Liddy

    Increasingly, health researchers are conducting their research in partnership with non-researchers such as patients and caregivers, advocacy groups, clinicians, and policymakers. The idea behind this partnership is to make research more relevant and appropriate. However, so far there is not much evidence about how this partnership or engagement actually affects research. We conducted an online survey of 12 teams in Canada that have engaged patients and other stakeholders in community based health research, partly as a requirement to obtain funding. We found that in many cases, the teams have engaged a wide variety and large number of stakeholders, and have involved them in many different stages of their research. Teams reported that their overall experience of this approach to research has been positive, but some challenges have been encountered along the way. Some teams found that it was difficult to communicate appropriately with all the stakeholders, and to keep them informed when research was going slowly. Other teams had trouble finding government representatives to work with. Several teams noted that engagement is time-consuming, and requires a lot of effort. Nevertheless, all teams reported that they had learned from the experience, and found it valuable. As a result, Canadian health care researchers are better positioned to engage with patients and other stakeholders in the future. Background Patient and other stakeholder engagement in research is increasingly important, but there is limited evidence of its impact. In 2013, the Canadian Institutes of Health Research launched a five-year Community Based Primary Health Care (CBPHC) initiative that funded 12 teams for innovative approaches to primary health care involving engagement with patients, communities, decision-makers, and clinicians across jurisdictions in Canada. The present study examines the extent of engagement by these teams, and the factors that affected it, either as challenges or opportunities. Methods We conducted a cross-sectional web-based survey across the 12 CBPHC Innovation Teams, in which we were also participants. We used a data collection tool developed by the Patient Centered Outcomes Research Institute that included both closed and open-ended questions. Results The quantitative data showed that the CBPHC Innovation teams have engaged with diverse stakeholders at different levels and in different stages of research. Almost all teams surveyed engaged with policymakers, most with clinicians and health system representatives, and more than half with patients, mostly at the level of consultation or collaboration. There were very few instances of stakeholder-led research reported. There was a near universal recognition of the importance of communications processes/tools in facilitating engagement, whereas time was the most commonly identified challenge. In almost all cases, challenges encountered were partially if not fully resolved. The qualitative findings showed that each team’s engagement was contextualized by factors such as the jurisdictions and geographic scope of the project, the number and type of stakeholders engaged and their level of involvement. These intersected with the researchers’ motivations for engagement, to give rise to diverse experiences, but ones that the CBPHC teams assessed positively as an approach to research. Conclusions Over the past five years, primary health care researchers in Canada have been actively engaging with patients and other stakeholders. The wide range, extent and nature of that engagement shows that these researchers have anticipated developments in this approach to research and are thus in a position to support and strengthen future efforts to understand the impact of this engagement on health care outcomes.

    更新日期:2019-11-28
  • Regional working in the East of England: using the UK National Standards for Public Involvement
    Res. Involv. Engagem. (IF 0) Pub Date : 2018-12-06
    Elspeth Mathie; Helena Wythe; Diane Munday; Graham Rhodes; Penny Vicary; Paul Millac; Julia Jones

    Involving patients and members of the public to help shape and carry out research is recommended in health research in the United Kingdom (UK). There are a number of regional networks of Patient and Public Involvement (PPI) groups, which support the collaboration between researchers, patients and public members. We are a group of researchers, patients and public members who came together via a PPI regional network in the East of England to collaborate on a research study about the extent of feedback from researchers to PPI contributors. The aim of this paper is to use the recently developed UK National Standards for Public Involvement to structure our thinking about what worked well and what did not, within our recently completed study. We believe this paper is one of the first to use the National Standards to structure a retrospective reflection on PPI within a study. Our findings showed that there are benefits of regional working, including easier access to public members and bringing together researchers, public members and those who run PPI groups for research collaboration. The main challenges included involvement of people before studies are funded and working across organisations with different payment processes. The National Standards for Public Involvement has provided a useful framework to consider how best to involve patients and members of the public in research and could be a helpful structure to reflect on successes and challenges in individual projects and also regional, national or international comparisons of PPI in research. Background Regional networks of Patient and Public Involvement (PPI) organisations, including academic institutions, health and social care services, charities, patient and public groups and individuals, can play an important part in carrying out health research. In the UK, recommendations by the National Institute of Health Research (NIHR) encourage the use of regional, collaborative networks with shared resources and training. Methods The newly developed UK National Standards for Public Involvement were used as a framework for a retrospective reflection of PPI within a recently completed research study which focused on feedback from researchers to PPI contributors. PPI contributors, those running PPI groups (PPI leads) and researchers involved in the study have contributed to this reflection by completing evaluation forms throughout the research alongside notes of meetings and co-authors’ final reflections. Results Results revealed a number of successes where the regional network was particularly useful in bringing together PPI contributors, those who lead PPI groups and researchers. The regional network helped researchers to get in touch with patients and members of the public. Challenges included involving people before funding and bureaucratic and financial barriers when working across different organisations in the region. The importance of working together in flexible, informal ways was key and on-going support for the PPI contributors was vital for continued involvement, including emotional support not just monetary. The first four National Standards of inclusive opportunities, working together, support and learning and communications were particularly useful as means of structuring our reflections. Conclusions To our knowledge, this is one of the first research studies to use the UK National Standards for Public Involvement as a framework to identify what worked well and the challenges of PPI processes. It is suggested that as more reflective papers are published and the National Standards are more widely used in the UK, many lessons can be learnt and shared on how to improve our Patient and Public Involvement within research studies. Evaluations or reflections such as these can further enhance our understanding of PPI with implications for regional, national and international comparisons.

    更新日期:2019-11-28
  • Using qualitative Health Research methods to improve patient and public involvement and engagement in research
    Res. Involv. Engagem. (IF 0) Pub Date : 2018-12-13
    Danielle E. Rolfe; Vivian R. Ramsden; Davina Banner; Ian D. Graham

    Patient engagement (or patient and public involvement) in health research is becoming a requirement for many health research funders, yet many researchers have little or no experience in engaging patients as partners as opposed to research subjects. Additionally, many patients have no experience providing input on the research design or acting as a decision-making partner on a research team. Several potential risks exist when patient engagement is done poorly, despite best intentions. Some of these risks are that: (1) patients’ involvement is merely tokenism (patients are involved but their suggestions have little influence on how research is conducted); (2) engaged patients do not represent the diversity of people affected by the research; and, (3) research outcomes lack relevance to patients’ lives and experiences. Qualitative health research (the collection and systematic analysis of non-quantitative data about peoples’ experiences of health or illness and the healthcare system) offers several approaches that can help to mitigate these risks. Several qualitative health research methods, when done well, can help research teams to: (1) accurately incorporate patients’ perspectives and experiences into the design and conduct of research; (2) engage diverse patient perspectives; and, (3) treat patients as equal and ongoing partners on the research team. This commentary presents several established qualitative health research methods that are relevant to patient engagement in research. The hope is that this paper will inspire readers to seek more information about qualitative health research, and consider how its established methods may help improve the quality and ethical conduct of patient engagement for health research. Background Research funders in several countries have posited a new vision for research that involves patients and the public as co-applicants for the funding, and as collaborative partners in decision-making at various stages and/or throughout the research process. Patient engagement (or patient and public involvement) in health research is presented as a more democratic approach that leads to research that is relevant to the lives of the people affected by its outcomes. What is missing from the recent proliferation of resources and publications detailing the practical aspects of patient engagement is a recognition of how existing research methods can inform patient engagement initiatives. Qualitative health research, for example, has established methods of collecting and analyzing non-quantitative data about individuals’ and communities’ lived experiences with health, illness and/or the healthcare system. Included in the paradigm of qualitative health research is participatory health research, which offers approaches to partnering with individuals and communities to design and conduct research that addresses their needs and priorities. Discussion The purpose of this commentary is to explore how qualitative health research methods can inform and support meaningful engagement with patients as partners. Specifically, this paper addresses issues of: rigour (how can patient engagement in research be done well?); representation (are the right patients being engaged?); and, reflexivity (is engagement being done in ways that are meaningful, ethical and equitable?). Various qualitative research methods are presented to increase the rigour found within patient engagement. Approaches to engage more diverse patient perspectives are presented to improve representation beyond the common practice of engaging only one or two patients. Reflexivity, or the practice of identifying and articulating how research processes and outcomes are constructed by the respective personal and professional experiences of researchers and patients, is presented to support the development of authentic, sustainable, equitable and meaningful engagement of patients as partners in health research. Conclusions Researchers will need to engage patients as stakeholders in order to satisfy the overlapping mandate in health policy, care and research for engaging patients as partners in decision-making. This paper presents several suggestions to ground patient engagement approaches in established research designs and methods.

    更新日期:2019-11-28
  • Involving young people in BRIGHTLIGHT from study inception to secondary data analysis: insights from 10 years of user involvement
    Res. Involv. Engagem. (IF 0) Pub Date : 2018-12-27
    Rachel M. Taylor; Jeremy S. Whelan; Faith Gibson; Sue Morgan; Lorna A. Fern

    Young people with cancer are often described as ‘hard to reach’, ‘difficult to engage’ and/or ‘vulnerable’. Consequently, they are often over looked for patient and public involvement activities. We set out to involve young people with cancer to work as co-researchers in the design of the largest ever study of young people with cancer, called BRIGHTLIGHT. In the 10 years since the BRIGHTLIGHT feasibility work began we have involved more than 1200 young people as co-researchers, collaborators, consultants and dissemination partners. We chronicle the key points of this 10-year journey, sharing our success, describing our challenges and the solutions we put in place; sharing also what worked and did not work. Here we share some of these experiences of involving young people in this research and offer some practical advice for those looking to do the same. Background Young people with cancer, broadly those aged 13–24 years at diagnosis, warrant special attention; physiological and psychological growth creates complex psychosocial needs which neither adult nor child systems are suitably designed to deal with. Resulting from these needs, they are often described as ‘vulnerable’, ‘hard to reach’ and ‘difficult to engage’, and consequently are often over looked for patient and public involvement/engagement (PPIE) roles. In our study ‘BRIGHTLIGHT’, we set out to evaluate whether specialist care for young people adds value, ensuring young people were central to our PPIE activities. We believe that BRIGHTLIGHT is unique as a very large study of young people with cancer which has successfully overcome the challenges of including young people in the research process so we are confident that they have influenced every aspect of study design, conduct and dissemination. Methods We chronicle a period of 10 years, over which we describe our approach and our methods to involving young people in PPIE activities in BRIGHTLIGHT. We describe the feasibility work, study set up, conduct and dissemination of our findings, and weave through our story of PPIE to illustrate its benefits. Through the narration of our experience we highlight significant points that both influenced and changed our direction of travel. We reflect on our experiences and offer some practical advice for those looking to do the same. Results In the 10 years since the BRIGHTLIGHT feasibility work began we have involved more than 1200 young people. Their contributions have been isolated and mapped over a 10-year period. We begin at an early step of identifying what research questions to prioritize, we then plot PPIE activities for one of these research priorities, place of care, which evolved into BRIGHTLIGHT. We document steps along the way to evidence the impact of this involvement. Conclusions Young people can make a valuable contribution to healthcare research given adequate support from the research team. Although some challenges exist, we propose that the benefits to young people, researchers and the study considerably outweigh these challenges and PPIE with young people should be integrated in all similar research studies.

    更新日期:2019-11-28
  • Involving service users in the qualitative analysis of patient narratives to support healthcare quality improvement
    Res. Involv. Engagem. (IF 0) Pub Date : 2019-01-03
    Louise Locock; Susan Kirkpatrick; Lucy Brading; Gordon Sturmey; Jocelyn Cornwell; Neil Churchill; Glenn Robert

    Patient or user involvement in health research is well-established but is often limited to advising on research questions and design, leaving researchers to collect and analyse ‘data’ (which in this paper means written copies of interviews with patients about their experiences). We were working with sets of interviews with 1) young people with depression and 2) people with experiences of stroke. We were looking for key themes that it would be useful for the NHS to know about, and we developed short films which healthcare staff can use to think about how to make care more patient-centred. We wanted to see what user involvement in this analysis would bring, and how best to achieve it practically. After the researcher team had analysed the interviews, we ran two one-day workshops with people with relevant experience as a patient/service user or carer. We gave them some brief training in how to analyse interviews and how they might be used for improving the quality of care. Then we looked at extracts from the interviews, and discussed whether people could see the same themes as the researcher. People identified similar themes to the researcher, but also identified new details the researcher had missed. However, they felt reading large amounts of text was not the best way to use their time and experience. Instead they recommended that a better approach would be for a researcher to meet with a group of users at the start of analysis, to discuss what to look out for. Background Patient or user involvement in health research is a well-established principle. However, involvement is often limited to advising on research questions and design, leaving researchers to complete data collection and analysis. Involvement in data analysis is one of the most challenging, least well-explored aspects of involvement. Qualitative interview data forms high volumes of rich, complex material which can be daunting to work with. Analysing narrative interviews with patients is central to a patient-centred quality improvement method called experience-based co-design. The analysis identifies ‘touchpoints’ – key moments of healthcare experiences – and leads to the production of a ‘trigger film’ to spark codesign discussions between patients and staff. We wanted to see what user involvement in this analysis would bring, and how best to achieve it. Methods As part of a wider secondary analysis study to create new trigger films, we re-analysed interview transcripts on experiences of young people with depression and experiences of stroke. We then ran two workshops with people with relevant lived experience, working with extracts from the same materials after brief training. Results People involved in the workshops identified similar themes to the researcher, but also brought some new insights. While they engaged easily with the materials selected, we under-estimated how much time it would take people to work through these. Discussion and sharing experiences and perspectives were highly valued in the first workshop. In the second workshop, we therefore started with group discussion, based on people’s own experience, of what they thought the touchpoints would be, and later viewed a draft trigger film together to see how it compared. Conclusions Those involved felt that while analysing transcripts was possible in small quantities, it was not best use of their time. We suggest that conversation, rather than data, is at the heart of user involvement in analysis. One way to retain the value of lived experience in the analytic process, without over-burdening people with data, is to elicit user reflections on their experience at the start of analysis, and use this as a guide to direct both researcher and service user attention during the remainder of the process.

    更新日期:2019-11-28
  • Framework, principles and recommendations for utilising participatory methodologies in the co-creation and evaluation of public health interventions
    Res. Involv. Engagem. (IF 0) Pub Date : 2019-01-09
    Calum F. Leask; Marlene Sandlund; Dawn A. Skelton; Teatske M. Altenburg; Greet Cardon; Mai J. M. Chinapaw; Ilse De Bourdeaudhuij; Maite Verloigne; Sebastien F. M. Chastin

    Background: Society has to cope with a large burden of health issues. There is need to find solutions to prevent diseases and help individuals live healthier lifestyles. Individual needs and circumstances vary greatly and one size fit all solutions do not tend to work well. More tailored solutions centred on individuals’ needs and circumstances can be developed in collaboration with these individuals. This process, known as co-creation, has shown promise but it requires guiding principles to improve its effectiveness. The aim of this study was to identify a key set of principles and recommendations for co-creating public health interventions. Methods: These principles were collaboratively developed through analysing a set of case studies targeting different health behaviours (such as reducing sitting and improving strength and balance) in different groups of people (such as adolescent schoolgirls and older adults living in the community). Results: The key principles of co-creation are presented in four stages: Planning (what is the purpose of the co-creation; and who should be involved?); Conducting (what activities can be used during co-creation; and how to ensure buy-in and commitment?); Evaluating (how do we know the process and the outcome are valid and effective?) and Reporting (how to report the findings?). Three models are proposed to show how co-created solutions can be scaled up to a population level. Conclusions: These recommendations aim to help the co-creation of public health interventions by providing a framework and governance to guide the process. Background: Due to the chronic disease burden on society, there is a need for preventive public health interventions to stimulate society towards a healthier lifestyle. To deal with the complex variability between individual lifestyles and settings, collaborating with end-users to develop interventions tailored to their unique circumstances has been suggested as a potential way to improve effectiveness and adherence. Co-creation of public health interventions using participatory methodologies has shown promise but lacks a framework to make this process systematic. The aim of this paper was to identify and set key principles and recommendations for systematically applying participatory methodologies to co-create and evaluate public health interventions. Methods: These principles and recommendations were derived using an iterative reflection process, combining key learning from published literature in addition to critical reflection on three case studies conducted by research groups in three European institutions, all of whom have expertise in co-creating public health interventions using different participatory methodologies. Results: Key principles and recommendations for using participatory methodologies in public health intervention co-creation are presented for the stages of: Planning (framing the aim of the study and identifying the appropriate sampling strategy); Conducting (defining the procedure, in addition to manifesting ownership); Evaluating (the process and the effectiveness) and Reporting (providing guidelines to report the findings). Three scaling models are proposed to demonstrate how to scale locally developed interventions to a population level. Conclusions: These recommendations aim to facilitate public health intervention co-creation and evaluation utilising participatory methodologies by ensuring the process is systematic and reproducible.

    更新日期:2019-11-28
  • A lung cancer research agenda that reflects the diverse perspectives of community stakeholders: process and outcomes of the SEED method
    Res. Involv. Engagem. (IF 0) Pub Date : 2019-01-11
    Carlin L. Rafie; Emily B. Zimmerman; Dawn E. Moser; Sarah Cook; Fatemeh Zarghami

    There is a need for methods that engage lay people and other stakeholders, such as patients and healthcare providers, in developing research questions about health issues important to them and their communities. Involving stakeholders helps ensure that funding goes to research that addresses their concerns. The SEED Method engages stakeholders in a systematic process to explore health issues and develop research questions. Diverse groups of stakeholders participate at three levels: as collaborators that lead the process throughout, as participants who use their expertise to develop the questions, and as consultants who provide additional perspectives about the health topic. We used the SEED Method to engage 61 stakeholders from different socioeconomic and professional backgrounds to create research questions on lung cancer outcomes. Participants included cancer patients and caregivers, healthcare providers and administrators, and policymakers from a rural Virginia community. They developed causal models that diagrammed factors that influence lung cancer outcomes and the relationships between them. They used these models to develop priority research questions. The questions reflect the participants' diverse perspectives and address different areas of inquiry related to lung cancer outcomes, including access to care, support systems, social determinants of health, and quality of care. Participants felt well prepared to perform the project tasks because they had the opportunity to review lung cancer information, receive causal model and research question development training, and participate in facilitated group activities. The SEED Method can be used in a variety of settings and applied to any health topic of interest to stakeholders. Background Engagement of stakeholders in prioritization of health research can help ensure that funding is directed to research that reflects their concerns and needs. The Stakeholder Engagement in quEstion Development and Prioritization (SEED) Method is a multi-stakeholder methodology that uses principles of community engagement and causal modeling to develop health research questions that reflect the priorities of patients, clinicians, and other community stakeholders. We conducted a demonstration of the SEED Method to generate research questions on lung cancer outcomes, and to evaluate the process, outcomes, and effectiveness of the method for generating a research agenda that reflects diverse stakeholder perspectives. Methods The SEED Method engages community members at three levels: collaboration, participation, and consultation. We conducted a demonstration project from November, 2015 to July, 2016, in a rural Virginia community that was experiencing a significant disparity in lung cancer outcomes. A community research team led the project and selected three distinct stakeholder groups (Topic groups, TG) for participatory engagement in analysis of the health issue, causal modeling, and research question development. We evaluated the quality of stakeholder engagement and compared TG causal models and research questions to evaluate the diversity of stakeholder perspectives resulting from the methodology. Results The resulting research agenda poses questions on how a broad range of topics including access to care, support systems and coping mechanisms, social determinants of health, and quality of care impacts lung cancer outcomes. Participants felt well prepared for the tasks they were asked to perform due to the technical trainings and facilitated modeling and question development activities that are part of the SEED Method. The causal models and research questions developed by the Topic Groups reflected the diverse perspectives of the stakeholders. Conclusions The SEED Method has the potential to generate relevant stakeholder-centered research agendas on a variety of health-related topics, and to create community capacity for sustained research engagement.

    更新日期:2019-11-28
  • Exploring experiences of people participation activities in a British national health service trust: a service user-led research project
    Res. Involv. Engagem. (IF 0) Pub Date : 2019-01-28
    Adrian Curwen; Jane Fernandes; Rachael Howison; Paul Binfield; Frank Rohricht; Domenico Giacco

    People participation teams are being established in many British NHS Trusts. They support active service user involvement in staff recruitment interviews, in evaluations of care and in programmes to improve services. No studies exploring experience of people involved in these activities are available in published mental health literature. In this project we explored benefits experienced and suggestions for improvement provided by service users. The design, materials and methods of the project were developed in workshops including N = 15 service users. Three service user researchers were trained to carry out research interviews and qualitative analysis of the data. They were responsible for the management of the project on a day-to-day basis with weekly supervision by academic researchers and authored this paper. The service user researchers interviewed people with at least 1 year of experience of being involved in a People Participation team activities. Interviews were based on a topic guide, which was developed in workshops with a larger number of service users (N = 15) and explored reasons for joining the group, how participation helped recovery and suggestions for service improvement. Fifteen service users were recruited and interviewed. Reasons for joining the group were identified: to “give back” to the service, to influence service change, curiosity, desire to meet like-minded people and to structure the day. Benefits reported included: sharing experiences, improving self-confidence, feeling valued, having a better understanding of services, overcoming personal fears, and developing better coping mechanisms for psychological difficulties. Being involved in People Participation activities helped to gain or refresh listening and interpersonal skills, communication skills, public speaking and creative skills and to develop better ways to cope with conflict. Suggestions for improvement were focused on changing staff attitudes, further promoting participation (e.g. through websites), simplifying payment procedures and establishing a moving-on support system to help people to access regular employment and gain full social inclusion. Our findings showed that People Participation initiatives can have benefits at least for some patients and help their recovery through a positive effect on self-confidence, providing room for feeling valued and for obtaining or refreshing personal skills. This provides support for the development and refinement of People Participation Teams and for larger scale research to test their effects.

    更新日期:2019-11-28
  • Parents and clinicians: partners in perinatal bereavement research –experiences from the International Stillbirth Alliance Conference 2017
    Res. Involv. Engagem. (IF 0) Pub Date : 2019-02-01
    Rachel Rice; Daniel Nuzum; Orla O’Connell; Keelin O’Donoghue

    In recent years, there has been a global call to reduce the numbers of preventable stillbirths and increase public awareness about the incidence and impact of pregnancy loss. The lived experiences of bereaved parents have much to contribute to developing the research agenda and clinical care in pregnancy loss. The multidisciplinary Pregnancy Loss Research Group (PLRG) based at the INFANT Centre at University College Cork and Cork University Maternity Hospital, has an established practice of active engagement and participation of patient members. This partnership provided the catalyst to model a similar collaborative approach between clinicians, researchers and bereaved parents when the PLRG was successful in their bid to host the International Stillbirth Alliance (ISA) annual conference in 2017. Over 400 hundred delegates from around the globe attended the conference, of which one quarter were bereaved parents. Establishing a culture of collaboration, support and mutual respect in the field of pregnancy loss, requires scientists, clinicians and parents to be brought together so each can be informed by the other in the efforts to prevent stillbirth and improve bereavement care. As part of ISA 2017 conference, a sub-committee of staff and parents was established to ensure that the voice of parents could contribute to the research agenda and developments in clinical and bereavement care. A creative workshop specifically for parents, followed by a parent assembly were organised to facilitate this. Remembrance activities, organised by the parent committee, were central to the conference and actively engaged in by parents, clinicians and researchers. This commentary, written collaboratively by a parent, a chaplain, a bereavement and loss specialist midwife and a consultant obstetrician, gives voice to this experience, identifying four key messages that arose from our reflection on the conference. These include; the value of active partnership between clinicians and patients, the use of creativity as a unifying expression of grief and as a means to facilitate learning, the value of collaboration with global stakeholders in raising awareness about stillbirth, and the importance of facilitating meaningful patient/public engagement in scientific research. The potential for education and learning opportunities are also explored, highlighting the connection between parents, researchers and clinicians as central stakeholders in the prevention of stillbirth and in improving bereavement care.

    更新日期:2019-11-28
  • The James Lind Initiative: books, websites and databases to promote critical thinking about treatment claims, 2003 to 2018
    Res. Involv. Engagem. (IF 0) Pub Date : 2019-02-04
    Iain Chalmers; Patricia Atkinson; Douglas Badenoch; Paul Glasziou; Astrid Austvoll-Dahlgren; Andy Oxman; Mike Clarke

    The James Lind Initiative (JLI) was a work programme inaugurated by Iain Chalmers and Patricia Atkinson to press for better research for better health care. It ran between 2003 and 2018, when Iain Chalmers retired. During the 15 years of its existence, the JLI developed three strands of work in collaboration with the authors of this paper, and with others. The first work strand involved developing a process for use by patients, carers and clinicians to identify shared priorities for research – the James Lind Alliance. The second strand was a series of articles, meetings, prizes and other developments to raise awareness of the massive amounts of avoidable waste in research, and of ways of reducing it. The third strand involved using a variety of approaches to promote better public and professional understanding of the importance of research in clinical practice and public health. JLI work on the first two themes has been addressed in previously published reports. This paper summarises JLI involvement during the 15 years of its existence in giving talks, convening workshops, writing books, and creating websites and databases to promote critical thinking about treatment claims. During its 15-year life, the James Lind Initiative worked collaboratively with others to create free teaching and learning resources to help children and adults learn how to recognise untrustworthy claims about the effects of treatments. These resources have been translated in more than twenty languages, but much more could be done to support their uptake and wider use.

    更新日期:2019-11-28
  • Co-building a patient-oriented research curriculum in Canada
    Res. Involv. Engagem. (IF 0) Pub Date : 2019-02-11
    Tim Bell; Lidewij Eva Vat; Colleen McGavin; Malori Keller; Leah Getchell; Anna Rychtera; Nicolas Fernandez

    Foundations in Patient-Oriented Research is a course designed and piloted in Canada to help patients, researchers, health care professionals and health system decision-makers gain an introductory understanding of patient-oriented research, the research enterprise, and how to work in a team. The course curriculum was co-developed by a diverse group of people with different lived experiences and relevant expertise. The course is meant to be delivered in a ‘co-learning format’ with classes comprised of all the above stakeholder groups learning together. The purpose of this study was to explore the experiences of the project leaders, developers, facilitators and patient co-facilitators who were involved in the process of co-developing, piloting and revising the curriculum. Our findings suggest that co-developing a patient-oriented research curriculum increases its quality, uptake and credibility. The co-development process not only resulted in training that benefited the target learners, but it provided valuable learning experiences about patient-oriented research for the project leaders, developers, facilitators and patient co-facilitators. These findings and the resulting recommendations may provide guidance for other learning and development groups wishing to undertake a similar project. Background Foundations in Patient-Oriented Research is a course designed and piloted in Canada to build mutually beneficial relationships for conducting patient-oriented research by ensuring that relevant stakeholders – patients, researchers, health care professionals and health system decision-makers – have a common foundational understanding of patient-oriented research, the research enterprise, and team dynamics. The curriculum was co-developed by a group of patients, researchers, patient engagement experts and curriculum development experts and involved consultations with broader groups of the relevant stakeholders mentioned above. It was designed to be delivered in a ‘co-learning format’ with classes comprised of all stakeholder groups learning together. The purpose of this study was to explore the experiences of individuals involved in the process of co-developing, piloting and revising Foundations in Patient-Oriented Research. Methods An embedded case study was conducted with individuals who were involved in the co-development, pilot and revision of Foundations in Patient-Oriented Research. These individuals took on different roles during the curriculum development process, including project co-lead, developer, facilitator, and patient co-facilitator. The constant comparison method was used to inductively develop themes from the two focus group sessions. Results Discussions from the focus groups revealed the value of co-building the content, co-facilitating the course sessions, and the importance of the co-learning format. The training itself was perceived as valuable and the systematic approach to co-development was perceived as a success. Several barriers were identified, including the amount of resources, time and commitment required to complete the project. There was a notable tension between maintaining the integrity of the content and having the freedom to adapt it to local contexts. Over the course of the project, the project co-leads, developers and facilitators found that their own understanding of patient-oriented research deepened. Conclusions The findings of this study suggest that co-developing a patient-oriented research curriculum increases its quality, uptake and credibility. The co-development process not only resulted in training that benefited the target learners, but also built capacity for patient-oriented research within the project co-leads, developers, facilitators and patient co-facilitators. Our findings and recommendations may provide guidance for other learning and development groups wishing to undertake a similar project.

    更新日期:2019-11-28
  • Patient and Public Engagement in Integrated Knowledge Translation Research: Are we there yet?
    Res. Involv. Engagem. (IF 0) Pub Date : 2019-02-12
    Davina Banner; Marc Bains; Sandra Carroll; Damanpreet K Kandola; Danielle E Rolfe; Caroline Wong; Ian D. Graham

    There have been many attempts to improve how healthcare services are developed and delivered. Despite this, we know that there are many gaps and differences in practice and that these can lead to poor patient outcomes. In addition, there are also concerns that research is being undertaken that does not reflects the realities or needs of those using healthcare services, and that the use of research findings in practice is slow. As such, shared approaches to research, such as integrated knowledge translation, are being used. Integrated knowledge translation (IKT) is a research approach that brings together researchers, along with other stakeholders that have knowledge about a particular healthcare issue. Stakeholders may include healthcare providers and policy-makers. More recently, there has been a growing awareness of the need to include patients and members of the public within research processes. These collaborative and patient-oriented research approaches are seen as a way to develop research that tackles ongoing gaps in practice and reflect the insights, needs and priorities of those most affected by health research outcomes. Despite great support, little is known about how these major research approaches are connected, or how they may bring about improvements in the development and use of research evidence. In this paper, we examine how IKT and patient engagement processes are linked, as well as exploring where differences exist. Through this, we highlight opportunities for greater patient engagement in IKT research and to identify areas that need to be understood further. Healthcare organizations across the world are being increasingly challenged to develop and implement services that are evidence-based and bring about improvement in patient and health service outcomes. Despite an increasing emphasis upon evidence-based practice, large variations in practice remain and gaps pervade in the creation and application of knowledge that improves outcomes. More collaborative models of health research have emerged over recent years, including integrated knowledge translation (IKT), whereby partnerships with key knowledge users are developed to enhance the responsiveness and application of the findings. Likewise, the meaningful engagement of patients, in addition to the inclusion of patient-reported outcomes and priorities, has been hailed as another mechanism to improve the relevance, impact and efficiency of research. Collectively, both IKT and patient engagement processes provide a vehicle to support research that can address health disparities and improve the delivery of effective and responsive healthcare services. However, the evidence to support their impact is limited and while these approaches are inextricably connected through their engagement focus, it is unclear how IKT and patient engagement processes are linked conceptually, theoretically, and practically. In this paper, we will begin to critically examine some of the linkages and tensions that exist between IKT and patient-engagement for research and will examine potential opportunities for IKT researchers as they navigate and enact meaningful partnerships with patients and the public.

    更新日期:2019-11-28
  • The development and user evaluation of health behaviour change resources for teenage and young adult Cancer survivors
    Res. Involv. Engagem. (IF 0) Pub Date : 2019-02-15
    Gemma Pugh; R. Hough; H. Gravestock; C. Davies; R. Horder; A. Fisher

    This paper describes the methods that were used to develop a health behaviour intervention specifically for teenage and young adult cancer survivors (TYACS). The program of work, carried out in partnership with CLIC Sargent (a UK based cancer charity for children and young people) was guided by The Behaviour Change Intervention Design Process. A systematic review of existing intervention studies was carried out and TYACS were surveyed on their interest in receiving health behaviour information and their preference regarding the format, delivery and timing of such information. Health professionals were also surveyed to gather their views on how health behaviour information would be best delivered to young people with cancer. The results of these studies informed the development of a collection of health behaviour change intervention resources containing comprehensive lifestyle information and behaviour change support tools. TYACS and TYA health professionals were invited to review and provide feedback on the relevance, appeal and usability of the resources. It is hoped that by involving TYACS and TYA representatives at every stage of intervention development the problem of low uptake and adherence commonly encountered during intervention piloting will be prevented. Background Teenage and Young Adult Cancer Survivors (TYACS) are advised to adopt a healthy lifestyle in order to reduce the impact of cancer and its treatments upon their long-term health. However, at present there are no interventions available in the UK to support TYACS to lead a healthy lifestyle. To inform the development of a lifestyle intervention for TYACS a partnership was set up between academic behavioural scientists and CLIC Sargent, a cancer charity which supports children and young people. Methods A series of studies to understand patient and professionals needs and perspectives regarding health behaviour change were carried out. TYACS were surveyed to gather data on their current health behaviour status; interest in, and experience of receiving, lifestyle advice; and preference regarding the type, format, and delivery of a lifestyle intervention. Health care professionals were surveyed simultaneously to gather their views on how best to promote health behaviour change to TYACS. In this paper we summarise key findings from the development work, the resulting lifestyle intervention, and new data from a preliminary evaluation study exploring TYACS and TYA health professionals’ views on the relevance, appeal and usability of the intervention resources. Results A collection of health behaviour change intervention resources containing lifestyle information and behaviour change support tools were developed. These intervention resources were well received by TYACS and health professionals with the majority rating the information as high quality, helpful and relevant. Over 80% of TYACS reported they would find the support tools ‘very appealing’ or ‘quite appealing’. TYACS and health professionals provided feedback on how the resources could be improved including commenting that more personalized or tailored health behaviour information would be beneficial. Discussion and conclusion It is hoped that by involving TYACS and TYA representatives at every stage of intervention development,and carrying out a preliminary evaluation of the intervention resources, the problem of low uptake and adherence commonly encountered during formal intervention piloting and evaluation will be prevented.

    更新日期:2019-11-28
  • ‘What can I do that will most help researchers?’ A different approach to training the public at the start of their involvement in research
    Res. Involv. Engagem. (IF 0) Pub Date : 2019-02-20
    Kristina Staley; Emma Cockcroft; Andrea Shelly; Kristin Liabo

    For patients and the public to work collaboratively with researchers, they need support and opportunities to engage in learning that builds on their skills and grows their confidence. In this article, we argue for a different approach to this learning, which starts with the expertise patients/ the public arrive with, and helps them identify and develop the soft skills required to influence researchers effectively. Much of the current training for patients and the public focuses on addressing the gaps in their knowledge and awareness about how research works and how public involvement adds value. Our training complements this by exploring the concept of ‘experiential knowledge’ in more depth. Patients and the public possess experiential knowledge (knowledge gained through lived experience) that researchers may not have. In the training we explore the nature of this expertise and other skills that patients/ the public bring, as well as how to identify who has the most relevant experiential knowledge in any given situation, and how best to share experiential knowledge to benefit researchers and maximise the impact of involvement. We co-produced this training with a patient member of the project team, and through feedback from patients and carers in an initial pilot. Our approach adds another dimension to preparing people for involvement and in particular for taking part in conversations with researchers that support mutual learning. We suggest this approach should be supported by separate, mirror training for researchers, that also develops their soft skills in preparation for learning from involvement.

    更新日期:2019-11-28
  • Hearing the voices of older adult patients: processes and findings to inform health services research
    Res. Involv. Engagem. (IF 0) Pub Date : 2019-02-21
    Sally Fowler Davis; Anne Silvester; Deborah Barnett; Lisa Farndon; Mubarak Ismail

    Whilst Patient and Public Involvement and Engagement (PPIE) are widely regarded as critical to developing clinical research, there is a perception that older adults may not be able to contribute and there is less emphasis on gaining a wide range of opinions before developing research questions or projects; for example an organisational change. This PPIE initiative used three PPIE processes including existing panels and wider networking to access older adults in the community who had used the hospital services and been discharged. Older adults expressed a range of views about their experience of discharge planning and this provided an important perspective on patients’ research priorities associated with their personal independence. Efforts were taken to ensure representative views across a cross section of the population. As a result of this initial PPIE, a permanent, co-ordinated ‘elders’ panel has been established to ensure a representation of older adult views for research, service development and evaluation. This panel has permanent, fully supported members who provide reflection and feedback on any projects and programmes relating to older people’s services in the City. Background Clinical academic research and service improvement is planned using Patient and Public Involvement and Engagement (PPIE) but older PPIE participants are consulted less often due to the perception that they are vulnerable or hard to engage. Objectives To consult frail older adults about a recently adopted service, discharge to assess (D2A), and to prioritise services improvements and research topics associated with the design and delivery of discharge from hospital. To use successive PPIE processes to enable a permanent PPIE panel to be established. Participants Following guidance from an established hospital PPI panel 27 older adult participants were recruited. Participants from Black, Asian and Minority Ethnic (BAME) communities, affluent and non-affluent areas and varied social circumstances were included. Methods Focus groups and individual interviews were conducted in participants own homes or nearby social venues. Results Priorities for discharge included remaining independent despite often feeling lonely at home; to remain in hospital if needed; and for services to ensure effective communication with families. The main research priority identified was facilitating independence, whilst establishing a permanent PPIE panel involving older adults was viewed favourably. Conclusions Taking a structured approach to PPIE enabled varied older peoples’ voices to express their priorities and concerns into early discharge from hospital, as well as enabling the development of health services research into hospital discharge planning and management. Older people as participants identified research priorities after reflecting on their experiences. Listening and reflection enabled researchers to develop a new “Community PPIE Elders Panel” to create an enduring PPIE infrastructure for frail older housebound people to engage in research design, development and dissemination.

    更新日期:2019-11-28
  • Correction to: Exploring experiences of people participation activities in a British national health service trust: a service user-led research project
    Res. Involv. Engagem. (IF 0) Pub Date : 2019-02-28
    Adrian Curwen; Jane Fernandes; Rachael Howison; Paul Binfield; Frank Rohricht; Domenico Giacco

    In the publication of this article [1] there is an error in the Results section in the sub-section ‘Better financial incentives and less bureaucracy’.

    更新日期:2019-11-28
  • ‘A group of totally awesome people who do stuff’ - a qualitative descriptive study of a children and young people’s patient and public involvement endeavour
    Res. Involv. Engagem. (IF 0) Pub Date : 2019-03-12
    Faye Forsyth; Caroline Saunders; Anne Elmer; Shirlene Badger

    In 2013, the Cambridge Clinical Research Facility (CCRF) set up a Children’s Non-Executive Research Board to advise on service and facility development and research involving children and young people (CYP). In 2015, the Children’s Experiences of Engaging in Research study (CHEER) was conceived to explore the Children’s Board as a patient and public involvement initiative. To explore the views of CYP, staff and parents involved in the Children’s Board with the view to describe their experiences of the selected mechanism of involvement (Children’s Board) within the context of operation (CCRF). A qualitative descriptive methodology involving qualitative content analysis of semi-structured interviews was used to derive descriptive summaries of the interview data. Interviews were carried out with staff (n = 5), children (n = 2) and parents (n = 2) who participated in the first or second Children’s Board meetings. Twelve descriptive summaries emerged: (1) CCRF ‘role’ perspective (2) purpose, remit and future direction (3) aspirations (4) learning as reciprocation (5) regular meetings, contact and feedback (6) expectation setting and ground rules (7) culture of PPI (8) surprise, underestimation and self-selection (9) reciprocity, incentivisation and participation (10) practicalities, timing and barriers (11) parental roles (12) event structure. These highlighted the importance of selecting the right mechanism of involvement in relation to context for involvement and the reductive biases adults and healthcare providers may unconsciously hold. Both of these aspects may affect the efficacy of PPI endeavours with CYP. Mechanisms by which CYP are involved in research should be considered from the outset; taking into consideration both the setting and contextual features. Contextual and process factors important in the adult PPI realm were generally observed in this PPI initiative with CYP; however further research is required to explore unconscious biases and reductive perceptions in adult facilitators.

    更新日期:2019-11-28
  • Learning as an outcome of involvement in research: what are the implications for practice, reporting and evaluation?
    Res. Involv. Engagem. (IF 0) Pub Date : 2019-03-12
    Kristina Staley; Duncan Barron

    Public involvement in research has evolved over the last two decades in a culture dominated by the principles of evidence-based medicine. It is therefore unsurprising that some researchers have applied the same thinking to involvement, particularly to involvement in research projects. This may explain why they tend to conceptualise involvement as an intervention, seek to evaluate its impact in the same way that treatments are tested, highlight the need for an evidence-base for involvement, and use the language of research to describe its practice and report its outcomes. In this article we explore why this thinking may be unhelpful. We suggest an alternative approach that conceptualises involvement as ‘conversations that support two-way learning’. With this framing, there is no ‘method’ for involvement, but a wide range of approaches that need to be tailored to the context and the needs of the individuals involved. The quality of the interaction between researchers and the public becomes more important than the process. All parties need to be better prepared to offer and receive constructive criticism and to engage in constructive conflict that leads to the best ideas and decisions. The immediate outcomes of involvement in terms of what researchers learn are subjective (specific to the researcher) and unpredictable (because researchers don’t know what they don’t know at the start). This makes it challenging to quantify such outcomes, and to carry out comparisons of different approaches. On this basis, we believe obtaining ‘robust evidence’ of the outcomes of involvement in ways that are consistent with the values of evidence-based medicine, may not be possible or appropriate. We argue that researchers’ subjective accounts of what they learnt through involvement represent an equally valid way of knowing whether involvement has made a difference. Different approaches to evaluating and reporting involvement need to be adopted, which describe the details of what was said and learnt by whom (short term outcomes), what changes were made as a result (medium term outcomes), and the long-term, wider impacts on the research culture and agenda. Sharing researchers’ personal accounts may support wider learning about how involvement works, for whom and when.

    更新日期:2019-11-28
  • Patient involvement in clinical trials: motivation and expectations differ between patients and researchers involved in a trial on urinary tract infections
    Res. Involv. Engagem. (IF 0) Pub Date : 2019-04-01
    Imke Schilling; Heike Behrens; Claudia Hugenschmidt; Jennifer Liedtke; Guido Schmiemann; Ansgar Gerhardus

    Patients should be involved in the design, conduct and dissemination of research that affects them. Patient involvement leads to empowerment and enhances the quality of research. Differing motives and expectations between researchers and patients involved can hamper involvement. We wanted to learn more about patients’ and researchers’ motives and expectations in order to improve the benefits of involvement for all parties. We implemented a patient board with ten patients and five researchers for a trial on urinary tract infections (UTIs). We asked each patient and researcher about his or her motivation and expectations regarding the patient board. We found that patients’ motivations included the wish to improve the treatment of UTIs, to support patient involvement as a principle, and to enhance the benefit of others. Furthermore they were interested in learning how a patients’ board works and in exchanging with peers and scientists. In addition, a (modest) monetary incentive for involvement was welcomed.Researchers were motivated by the possibility to improve research and to contribute to the empowerment of patients. They also wanted to enhance their career opportunities, to learn more about patient involvement and to meet the increasing demand for it. Some patients expressed insecurity about their roles and tasks in the patient board. Among the researchers, some envisaged a rather passive role for themselves in the patient board while others expected to take over a more active role. Researchers emphasized that the ways and the means of communication between the researchers and the patients should be explicitly discussed. Background It has been increasingly recognized that patients should be actively involved in the design, conduct and dissemination of research. Besides empowering patients and democratizing research, involvement can enhance the quality of research and the development of equitable healthcare solutions. Differing motives and expectations between researchers and involved patients can hamper the conduct of involvement. However, little is known about patients’ and researchers’ motivations for involvement. Our aim was to study the motivation and expectations of patients and researchers towards patient and public involvement (PPI). Methods We implemented a patient board comprising ten patients and five researchers for a randomized controlled trial on the treatment of urinary tract infections (UTI). Prior to the first board meeting, we conducted telephone interviews with all researchers and patients regarding their motivation for involvement in the patient board and their expectations. The interviews were analyzed using thematic qualitative text analysis. Results Patients’ motivations included interest in improving UTI treatment, in supporting PPI, engaging for the benefit of others, exchanging with peers and scientists as well as in the methods of the board and the monetary incentive. Researchers wanted to improve research, enhance their professional development, empower patients, meet the formal demand for PPI, and learn about PPI. Regarding expectations, patients expressed insecurities about their roles, tasks and topics of discussion. They wished for an open exchange and hoped their involvement would make an impact. Researchers’ expectations for their own roles ranged between being a rather passive supporting force and active engagement in the board. The question of how to ensure the communication between the trial team and the patient board was of high importance for the researchers. Conclusions Patients’ and researchers’ motives and expectations were similar in some aspects but differed regarding agenda setting and understanding of their roles. Getting to know patients’ and researchers’ motivations and expectations at the beginning allowed us to anticipate potential conflicts or disappointments early on and to take them into consideration during the conduct of our PPI.

    更新日期:2019-11-28
  • Supported and valued? A survey of early career researchers’ experiences and perceptions of youth and adult involvement in mental health, self-harm and suicide research
    Res. Involv. Engagem. (IF 0) Pub Date : 2019-04-29
    Ruth Wadman; A. Jess Williams; Katherine Brown; Emma Nielsen

    Patient and public involvement (PPI) in mental health research, including self-harm and suicide research, is desirable (as with other health topics) but may involve specific challenges given the perceived sensitivity of the topic. This is particularly so when involving young people. We explore the experiences and perceptions of Early Career Researchers (ECRs) undertaking youth and adult involvement work in mental health, self-harm and/or suicide research. We consider current practice, barriers and facilitators. An online survey of a convenience sample of ECRs (N = 41) undertaking research on mental health, self-harm and/or suicide. Questions examined the perceived value of involvement work, involvement methods used, funding availability and the extent to which researchers felt knowledgeable, supported and confident in their involvement activities. Descriptive statistics are presented with appropriate tests. Open-ended questions, related to barriers and facilitators for involvement work, were subjected to an inductive thematic analysis. Youth and adult involvement work were valued to a similar extent, though institutions were reported to value youth involvement to a lesser extent. Researchers’ knowledge, confidence and support ratings were comparable for youth and adult involvement. The involvement methods used with young people and adults were also similar, with analysing data being the least popular method used and developing resources (e.g. information sheets) being the most popular method used. Less than a third of participants reported that funding was available for their research involvement activities. Barriers to involvement in research on mental health, self-harm and suicide were: ethical issues and perceived risk; real costs (in terms of money/time) versus perceived value; and the challenge of recruiting people. Facilitators to involvement work were: expert examples, expertise and guidelines; and investment in involvement work. ECRs in the fields of mental health, self-harm and suicide are engaged in youth and adult involvement work. They value (find worthwhile) youth and adult involvement work to a similarly high extent, but feel their institutions may regard youth involvement slightly less highly than adult involvement. ECRs rate themselves as feeling similarly knowledgeable, confident and supported when doing involvement activities with both age groups. Nonetheless, significant barriers to involvement work on these topics are reported and are generally issues that need to be tackled at an institutional level (ethical/governance issues and lack of funding).

    更新日期:2019-11-28
  • Recruitment of caregivers into health services research: lessons from a user-centred design study
    Res. Involv. Engagem. (IF 0) Pub Date : 2019-05-20
    Myles Leslie; Akram Khayatzadeh-Mahani; Gail MacKean

    With patient and public engagement in many aspects of the healthcare system becoming an imperative, the recruitment of patients and members of the public into service and research roles has emerged as a challenge. The existing literature carries few reports of the methods – successful and unsuccessful – that researchers engaged in user-centred design (UCD) projects are using to recruit participants as equal partners in co-design research. This paper uses the recruitment experiences of a specific UCD project to provide a road map for other investigators, and to make general recommendations for funding agencies interested in supporting co-design research. We used a case study methodology and employed Nominal Group Technique (NGT) and Focus Group discussions to collect data. We recruited 25 family caregivers. Employing various strategies to recruit unpaid family caregivers in a UCD project aimed at co-designing an assistive technology for family caregivers, we found that recruitment through caregiver agencies is the most efficient (least costly) and effective mechanism. The nature of this recruitment work – the time and compromises it requires – has, we believe, implications for funding agencies who need to understand that working with caregivers agencies, requires a considerable amount of time for building relationships, aligning values, and establishing trust. In addition to providing adaptable strategies, the paper contributes to discussions surrounding how projects seeking effective, meaningful, and ethical patient and public engagement are planned and funded. We call for more evidence to explore effective mechanisms to recruit family caregivers into qualitative research. We also call for reports of successful strategies that other researchers have employed to recruit and retain family caregivers in their research.

    更新日期:2019-11-28
  • Facilitating non-tokenistic user involvement in research
    Res. Involv. Engagem. (IF 0) Pub Date : 2019-06-04
    Grace Inga Romsland; Kate Louise Milosavljevic; Tone Alm Andreassen

    With the increase in user activism in the Western societies in recent years, there has also been an increase in promoting user involvement in research. Hence, is necessary to address the danger of tokenism, a false appearance of inclusiveness, in user involvement, as well as to explore methods for promoting active user involvement. Using a Norwegian research project on the rehabilitation processes following traumatic injuries organised via user involvement, this study reviews ways in which to avoid tokenism in user involvement and how to instead stimulate active user engagement in research. The analysis employs an ethnographic approach using participant observations from real life settings involving user involvement during the five years research process. The empirical material includes 472 pages of transcribed audio recordings from meetings between researchers and collaborators discussing personal experiences with traumatic injuries, and 340 pages of documents on the project’s involvement process. This empirical material was examined by thematic analysis, involving processes such as decontextualising, flagging and re-contextualising. Two main categories of facilitation emerged as promoting non-tokenistic, active user involvement in research: 1) defining the collaborative arena, (i.e. the setting of collaboration) which entails preparing for participation and promoting active involvement, and 2) designing for research counselling, which involves gathering user perspectives and valuing criticism. Taking into account the existing asymmetric relationships between researchers and collaborators, enabling more evenly distributed power dynamics also proved to be essential. To achieve active participation that is relevant to the collaborators, two interconnected yet analytically independent themes should be considered: the collaborative arena and counselling. Both prove crucial for curbing power imbalance and stimulating the involvement process. The study indicates that non-tokenistic involvement should be anchored in the respect for participants and their ability to make contributions. This analysis can help researchers who seek active engagement and non-tokenistic involvement in research to find methods for facilitating and organising participation in their fields.

    更新日期:2019-11-28
  • Co-producing a shared understanding and definition of empowerment with people with dementia
    Res. Involv. Engagem. (IF 0) Pub Date : 2019-06-10
    Tracey McConnell; Tristan Sturm; Mabel Stevenson; Noleen McCorry; Michael Donnelly; Brian J. Taylor; Paul Best

    Empowerment for people with dementia (PWD) is not well defined within the research literature and we feel that this is an important area for development. It is important to seek, consult, and co-produce such a definition with PWD who are more actively involved in their communities post diagnosis (e.g. no longer the ‘long goodbye’). This study seeks to combine academic literature review methods with participatory/co-production methods in order to address this gap. We feel this approach also adds to developing methodologies in the field of co-production and user involvement. We use a unique approach toward a definition of empowerment for PWD. Phase 1 - A scoping review of medical/health, social care and social policy-based databases to identify any previous literature that may have defined empowerment exclusively for PWD. Based on this literature, we collected a list of terms relating to empowerment for PWD. Phase 2 – Using empowerment key terms set on cards formulated from Phase 1 across three co-production workshops, academic team members, and nine members of Dementia NI (an organisation founded and led by people with dementia) we reviewed the findings of this search and co-produced an agreed definition they felt best described empowerment for them. Phase 1 and 2 led to a definition of empowerment relevant to PWD. This shared understanding of empowerment was defined by PWD as ‘A confidence building process whereby PWD are respected, have a voice and are heard, are involved in making decisions about their lives and have the opportunity to create change through access to appropriate resources’. The strength of this research lies in addressing the current confusion and arbitrariness of empowerment within the context of dementia. This coproduced work also provides evidence for not only the possibility, but also the added value of involving PWD in research in terms of unique insights afforded by their lived experiences.

    更新日期:2019-11-28
  • The Maudsley Biomedical Research Centre (BRC) data linkage service user and carer advisory group: creating and sustaining a successful patient and public involvement group to guide research in a complex area
    Res. Involv. Engagem. (IF 0) Pub Date : 2019-06-11
    Amelia Jewell; Megan Pritchard; Katherine Barrett; Patrick Green; Sarah Markham; Sharon McKenzie; Roger Oliver; Maria Wan; Johnny Downs; Robert Stewart

    Patient and Public Involvement (PPI) in health and social care research has been shown to improve the quality and relevance of research. PPI in data linkage research is important in ensuring the legitimacy of future health informatics initiatives, but remains sparse and under-developed. This article describes the setting up and evaluation of a service user and carer advisory group with the aim of providing feedback and advice to researchers developing or making use of database linkages in the field of mental health. The aim of this study is to describe the creation and formative evaluation of the service user and carer advisory group after a trial period of 12 months. Six individuals were recruited to the group all of whom had personal experience of mental illness. A formative evaluation was conducted after a trial period of 12 months. Evaluation revealed that the group succeeded in promoting dialogue between service users/carers and researchers. Factors that contributed to the success of the group’s first year included the opportunity it provided for researchers to involve service users and carers in their projects, the training provided to group members, and the openness of researchers to receiving feedback from the group. The group encourages the incorporation of PPI in data linkage research which helps to ensure the legitimacy of data linkage practices and governance systems whilst also improving the quality and relevance of the research being conducted using linked data.

    更新日期:2019-11-28
  • Effective involvement: a report on the evaluation of a research awareness training package for public involvement in health research
    Res. Involv. Engagem. (IF 0) Pub Date : 2019-06-13
    Catherine Richardson; Ilyas Akhtar; Christine Smith; Amanda Edmondson; Alison Morris; Janet Hargreaves; Christine Rhodes; Jo Taylor

    As the role of Patient and Public Involvement contributors expands to all stages of the research cycle, there is increasing demand for training that meets the needs of this diverse population. To help meet this demand the National Institute for Health Research Collaboration for Leadership in Applied Health Research and Care, Yorkshire and Humber, worked with members of the public to develop a bespoke training package. The University of Huddersfield’s Public Partnership Group were invited to host the training and undertake an independent evaluation. Participatory action research was used to structure the evaluation, such that participants in the training and public members of the evaluation team were co-collaborators with a robust, significant and visible share in the process. This is evidenced by public team members’ roles in undertaking the majority of data gathering, including surveys, non-participant observation and interviews, and analysis, engaging in all reflective discussions, leading on producing a formal report and contributing significant sections of this paper. The evaluation was approved by a University ethics panel. Public involvement consisted of the 13 participants who received the training, and 3 of the 6 members of the evaluation team. Data collection took place between November 2017 and March 2018. The evaluation found that participants understood more about the research process from attending the training, gaining greater confidence in their ability to volunteer to get involved. It also highlighted the difficulties of meeting the training needs of a diverse group with varying experiences and expectations. Skilful facilitation was needed to maintain pace, whilst engaging people with different levels of interest and knowledge. The management of the environment to maximise comfort and involvement was important. Early feedback to the delivery team enabled timely updating of the package. Involvement in the evaluation was initially daunting for the three public members of the team, but hugely enjoyable and fulfilling, as well as enriching the process and outcomes. In particular, public involvement in the analysis and interpretation stages increased the authenticity of the evaluation findings. This evaluation validated the training package and demonstrated the value and impact of Public Involvement at all levels in research.

    更新日期:2019-11-28
  • Reflections on qualitative data analysis training for PPI partners and its implementation into practice
    Res. Involv. Engagem. (IF 0) Pub Date : 2019-08-14
    Alison Cowley; Margaret Kerr; Janet Darby; Pip Logan

    Service users should be involved in every part of the research process, including analysis of qualitative research data such as interviews and focus groups. To enhance their participation, confidence and contributions, training and support for both the ‘professional’ researcher and lay member of public is essential. Historically this has taken a number of forms from short 1 day training sessions through to training spread out over several months. There currently is limited guidance on the quantity and content of such training sessions for Patient and Public Involvement (PPI) Partners. This paper discusses and explores the content and delivery of qualitative analysis training held over two sessions of 3 h duration to members of a University PPI group. The training was designed by experienced qualitative researchers and PPI partners based on available literature and research expertise. Training included the theory of qualitative research methods, and practical qualitative analysis coding skills. These skills were developed through the use of ‘mock’ interviews which participants practiced coding in supportive group sessions. Their feedback on the training is provided. One of the PPI partners subsequently went onto code data with a researcher working on a funded research study, and has reflected on both the training sessions and the subsequent analysis of the data. These reflections have been supplemented by reflections of the researcher who worked alongside the PPI partner, revealing that the process challenged perspectives and helped them view data through a service users eyes. A positive working relationship was central to this. Service users should be involved in every part of the research process to ensure that interventions are fit for those whom they are intended to help. Involving service users in analysing qualitative data such as focus groups and interviews has been recognised as particularly valuable. Older people have frequently been less involved in these initiatives. A wide range of training programmes have been proposed but there is currently limited guidance on the quantity and content of training sessions to support training Patient and Public Involvement (PPI) Partners. This paper discuses and explores the content and delivery of qualitative data analysis training to members of a University PPI Group. Existing literature on PPI in qualitative data analysis was reviewed by the research team and an outline programme was designed. This comprised of two three hour sessions held at an easily accessible venue familiar to members of the PPI group. The course included theories behind qualitative research methodology and methods, what is coding and how to code independently and as part of a research team using Thematic Analysis. A mock research question was generated and two mock interviews were completed, audio recorded and transcribed verbatim. This provided participants with real life experience of coding data. The session was positively reviewed and said to be interesting, enjoyable and provided a good overview of qualitative analysis. One of the PPI partners subsequently went onto code data with a researcher working on a funded research study, and has reflected on both the training sessions and the subsequent analysis of the data. These reflections have been supplemented by reflections of the researcher who worked alongside the PPI, revealing that the process challenged perspectives and helped them view data through a service users eyes. A positive working relationship was central to this. Feedback suggests that the training enabled PPI partners to become active members of the research team in qualitative data analysis. There is a need for further research into the optimal amount of training needed by PPI’s to participate as partners in qualitative analysis.

    更新日期:2019-11-28
  • Patient and public involvement in designing and conducting doctoral research: the whys and the hows
    Res. Involv. Engagem. (IF 0) Pub Date : 2019-08-16
    Justine Tomlinson; Kristina Medlinskiene; V-Lin Cheong; Sarah Khan; Beth Fylan

    Evidence shows that public and patient involvement in research has a positive effect on its quality and end-results. Thus, public and patient involvement in all stages of research is becoming commonplace. There are limited detailed examples however, that describe how to make this possible, especially for those doing PhD research. Doctoral researchers are often new to research practice or have limited experience and are often bound by strict time and financial constraints. It is also not usually a requirement of the award to involve public and patients in their research. Hence, they may not feel confident or motivated to involve or engage with public and patients during their research. We, four doctoral researchers, share examples from our own research studies that have included different approaches to public and patient involvement. Two studies formed public and patient advisory groups who helped design the research questions, data collection tools and recruitment methods. One enlisted the help of an online public and patient panel from a local hospital. A different study worked with patients from an established group to help define key medical words. We did face some challenges, such as the need to develop good group work skills and to apply for grants to cover reimbursement, but we all found it beneficial to involve patients in our studies. We noticed a positive effect on each study’s progression and an improvement in our own self-esteem. In addition, having public and patient involvement helped reduce the isolation we felt as doctoral researchers. Thus, we strongly encourage more doctoral researchers to involve public and patients in their studies. Public and patient involvement (PPI) has been shown to have a positive impact on health and social care research. However, adequate examples describing how to operationalise effective PPI, especially in doctoral studies, are lacking. Hence, doctoral researchers new to research, or those with limited experience, can be discouraged from facilitating PPI in their research. This paper aims to describe and discuss in detail the approaches used by four doctoral researchers to incorporate PPI at different stages of their research studies from study design to disseminating findings. We aim to inform other doctoral researchers about the challenges and limitations relating to PPI that we faced. Through these, we share pragmatic recommendations for facilitating PPI during doctoral studies. The description of four case studies demonstrated that PPI could be incorporated at various stages during doctoral research. This has had a beneficial impact on our research study progression, researcher self-esteem and lastly, helped alleviate researcher isolation during doctoral studies.

    更新日期:2019-11-28
  • Adapting the James Lind Alliance priority setting process to better support patient participation: an example from cystic fibrosis
    Res. Involv. Engagem. (IF 0) Pub Date : 2019-08-20
    N. J. Rowbotham; S. J. Smith; Z. C. Elliott; P. A. Leighton; O. C. Rayner; R. Morley; A. R. Smyth

    Cystic fibrosis (CF) is the commonest life-limiting inherited disorder in the UK. It affects many parts of the body including the lungs and gut leading to increased infection and problems digesting food. People with CF need to undergo many treatments each day throughout their whole lives. These include tablets, inhalers and breathing exercises, which are a huge burden, taking up several hours every day It is therefore, really important that the treatments we give are supported by good evidence, usually gathered from clinical trials. Unfortunately, we do not have good evidence for many of the CF treatments. We recently ran an exercise known as a James Lind Alliance Priority Setting Partnership (JLA PSP) to find out which the CF community feel are the top priority research questions. People with CF and those who look after them suggested questions to be answered by clinical trials. Through a series of online surveys and workshops these were then shortlisted to give a final top ten. Due to infection risk people with CF are advised not to mix, this meant we had to do things differently to the usual way JLA PSPs are carried out. We used videoconferencing to enable multiple people with CF to participate. Surveys were accessible online and promoted through social media. Background The James Lind Alliance (JLA) method is well recognised for setting research priorities. The JLA approach involves a combination of surveys and workshop interactions between patients, carers and health care professionals to identify and agree on a “top ten” list of research questions. Respiratory infection is one of the hallmarks of cystic fibrosis (CF). To avoid cross infection, patients are advised not to meet face to face, preventing us following standard JLA methodology. Here we describe adaptations made during our recent JLA Priority Setting Partnership (PSP) in CF. Methods We elicited and prioritised research questions, using sequential online surveys, promoted through social media. People with CF participated in steering committee meetings and the final workshop, using videoconferencing. Alterations to workshop methodology enabled participants attending in person and those joining remotely, to contribute equally. We also altered the JLA methodology to include “lone” questions, asked by only one survey respondent. We are now working with the CF community to co-produce research projects that answer these top ten. Results There were 482 respondents, from 23 countries, who submitted 1080 questions. Increases in the number of responses occurred just after promotion on social media. Use of videoconferencing enabled participation of multiple people with CF and ensured participation from anywhere in the world, including hospital inpatients. Inclusion of lone questions resulted in one being included in our top ten. Conclusions There is no “one-size-fits-all” for patient involvement methodologies. Through altering the JLA methods to fit our patient group we achieved wide participation. We believe that methods used in our project may also be applied to future partnerships to increase participation, especially where people may be hospitalised or be unable to travel. The methodology we are developing through the JLA PSP CF2 project may be useful for other PSPs to follow.

    更新日期:2019-11-28
  • Evaluating the acceptability of a co-produced and co-delivered mental health public engagement festival: Mental Health Matters, Jakarta, Indonesia
    Res. Involv. Engagem. (IF 0) Pub Date : 2019-09-06
    Helen Brooks; Irmansyah Irmansyah; Herni Susanti; Bagus Utomo; Benny Prawira; Livia Iskandar; Erminia Colucci; Budi-Anna Keliat; Karen James; Penny Bee; Vicky Bell; Karina Lovell

    Public engagement events are an important early strategy in developing a meaningful research agenda, which is more impactful and beneficial to the population. Evidence indicates the potential of such activities to promote mental health literacy. However, this has not yet been explored in Indonesia. This paper describes a mental health public engagement festival carried out in Indonesia in November 2018 and uses evaluation data to consider the acceptability and use of such activities in Indonesia in the future. Evaluation data was collected from 324 of the 737 people who attended a six-day mental health festival comprising 18 events including public lectures, film screenings, arts activities, exercise classes and panel discussions. Attendees were asked to evaluate the festival in terms of its quality, benefits and areas for improvement. Descriptive statistics were used to analyse the evaluation data. 87 service users, carers, academics and professionals also engaged in a research prioritisation exercise to collaboratively determine mental health research priorities for Indonesia. Participants evaluated the festival extremely positively with a significant majority (92%) rating the quality of the festival as good or excellent. Attendees reported an increase in their understanding of mental health issues and identified intended behaviour change including an increased propensity for future engagement with mental health research. Key strengths of the festival included the central role of patients, carers and the local community in the design and delivery of the festival which promoted emotional engagement and development of shared understanding and the use of international experts which in attendees’ opinion further enhanced the credibility of festival activities. This manuscript indicates that a co-produced mental health public engagement festival is a potentially acceptable way to increase awareness of mental health in Indonesian populations. Future festivals should be larger in scope and target men, older people and the general public to maximise benefit and incorporate rigorous evaluation of effectiveness.

    更新日期:2019-11-28
  • Response to “comments on: involving service users in the qualitative analysis of patient narratives to support healthcare quality improvement
    Res. Involv. Engagem. (IF 0) Pub Date : 2019-09-11
    Louise Locock; Susan Kirkpatrick; Lucy Brading; Gordon Sturmey; Jocelyn Cornwell; Neil Churchill; Glenn Robert

    /n /n /n /n /n /n /n /n /n /n /n /n /n /n

    更新日期:2019-11-28
  • Comments on: involving service users in the qualitative analysis of patient narratives to support healthcare quality improvement
    Res. Involv. Engagem. (IF 0) Pub Date : 2019-09-11
    Marney Williams; Mike Etkind; Fran Husson; Della Ogunleye; John Norton

    Some previous researchers (Locock et al) have written about what may be the best way for public contributors to be involved in data analysis in research projects. Their experience has been that giving public contributors large amounts of text to read is not the best use of their time and experience. They have recommended that a better approach would be for a researcher to meet with a group of users at the start of analysis, to discuss what to look out for. However, as another patient group that has been involved in analysis, we think differently. The approach we used was to be more fully involved in the project over a longer time period. Analysis tasks were broken down into stages to make it easier for those taking part. We found that this allowed us to take part fully without placing too much burden on us. We found that our approach was workable and successful and see no reason why it could not be applied in other circumstances. In this journal, Locock et al. have suggested that service users should not be overburdened with large amounts of data, and that eliciting users’ reflections on their experience at the start of analysis and using this as a guide to direct researcher attention during the remainder of the process may work better. As public contributors that have been involved in analysis we suggest an alternative approach in this brief letter, based on our own experiences.

    更新日期:2019-11-28
  • Engaging patients and the public in Health Research: experiences, perceptions and training needs among Manitoba health researchers
    Res. Involv. Engagem. (IF 0) Pub Date : 2019-10-08
    Leah K. Crockett; Carolyn Shimmin; Kristy D. M. Wittmeier; Kathryn M. Sibley

    The significance of patient and public engagement is increasingly recognized in health research, demonstrated by explicit requirements for patient and public engagement by funding agencies and journals. Such requirements have charged health researchers with leading patient and public engagement efforts, but evidence suggests that this practice is still evolving. Little research has explored the experiences and training needs of health researchers. This study aimed to establish a baseline understanding of the experiences, perceptions and training needs of health researchers in engaging patients and the public in health research in the context of Manitoba. A cross-sectional 50-item questionnaire was distributed using a multi-phase purposive sampling strategy targeting health researchers in Manitoba, Canada. Data was summarized using frequencies, percentages and analyzed using chi-square testing. A local patient engagement advisory group was consulted at the interpretation stage of the study to obtain feedback and input on the findings and their implications. Responses from 53 health researchers were included. Most participants had engaged patients and the public in their own research (n = 43, 81.1%). Those who had engaged reported having some (n = 19, 44.2%), extensive (n = 14, 32.6%) or a little (n = 10, 23.3%) experience with this process. Most engaged at the levels of inform, consult or involve (81.3, 64.6 and 54.2% respectively), while fewer engaged at the collaborate (37.5%) or patient-directed levels (12.5%). Recruitment occurred using a number of approaches and engagement occurred at various phases of the research process, while main groups engaged were patients (n = 38, 82.6%) and families/caregivers (n = 25, 54.4%). Barriers to engaging patients and the public in health research included funding, time, compensation, logistics, recruitment, motivation at both the patient and researcher level, and skills of researchers to engage. Researchers reported an overwhelming need and interest for supports, funding and training to effectively engage patients and the public in health research. Consultation with the patient advisory group provided further insight on study findings and areas for future research. Participating Manitoba health researchers engaged patients and the public in health research at multiple, but typically lower levels of involvement. Findings highlight the barriers to effective, authentic and meaningful patient and public engagement and support the need for targeted training, supports, funding and time for health researchers.

    更新日期:2019-11-28
  • Patient involvement in cardiovascular research: a qualitative impact evaluation
    Res. Involv. Engagem. (IF 0) Pub Date : 2019-10-14
    Eva Vroonland; Inge Schalkers; Daphne Bloemkolk; Christine Dedding

    Involving patients in scientific research has been shown to improve the relevance of the research, as well as its quality and applicability. Harteraad, the Dutch patient organization for people with cardiovascular diseases, has a Committee of Experienced Experts (patients) advising researchers on the content of grant proposals prior to submission. Until now, the impact of the committee’s advice was unknown. This study, initiated by Harteraad, aimed to evaluate the impact of the provided advice on the content of grant proposals and investigate how to strengthen this impact. Fourteen grant proposals both prior to and after receiving the committee’s advice were compared in order to analyse how the advice had been incorporated into the final proposal. Subsequently, 10 researchers who received the committee’s advice were interviewed. Moreover, a focus group discussion was conducted with five committee members. Document analysis showed that almost 40% of the advice was incorporated in the final grant proposals. Researchers made several changes to their proposals, such as increasing the extent of patient involvement throughout the research, use of simpler language, and/or adding information on the consequences of an intervention for patients. Advice requiring fundamental changes in the research design was most often not incorporated. This finding was confirmed by the interviewees, although some stressed to use the committee’s advice later on during the execution of the research. According to the interviewees and members of the committee, the impact of the committee’s advice could be strengthened in several ways, including 1) improving training/education for researchers and the committee, 2) organizing dialogues between patients and researchers, 3) aligning perspectives between funding bodies and patient organizations on what is expected from researchers, 4) making it obligatory for the researchers to clarify how the patient’s advice was incorporated, and 5) fostering researchers’ internal motivation for involvement. Committee members have contributed to implementing these recommendations. The committee’s advice has considerable impact on the content of grant proposals. However, effort is required to increase the value that is currently attributed to patient involvement, and to support researchers in the required organizational and cultural changes to meaningfully involve patients in research.

    更新日期:2019-11-28
  • Innovating public engagement and patient involvement through strategic collaboration and practice
    Res. Involv. Engagem. (IF 0) Pub Date : 2019-10-21
    Leah Holmes; Katharine Cresswell; Susannah Williams; Suzanne Parsons; Annie Keane; Cassie Wilson; Safina Islam; Olivia Joseph; Jahanara Miah; Emily Robinson; Bella Starling

    Patient and public involvement and engagement is an important and expected component of health-related research activity in the UK. Specifically within the health research sphere, public engagement (usually defined as raising awareness of research) and patient involvement (usually defined as actively involving people in research) have traditionally been seen as separate but have much to gain from working together towards a common goal of better health outcomes for all. This paper describes a unique approach taken by the Public Programmes Team: a small interdisciplinary team of public engagement specialists, with backgrounds in science, community development, public engagement and involvement, policy, ethics, communications, industry, museums and creative practice, embedded within translational research infrastructure and delivery in Manchester in the North West of England. We propose a new model of professional practice – a 'cycle' of engagement and involvement – innovating across the complementary fields of public engagement and patient involvement, and working inclusively and in partnership with people in health research. Further, our approach capitalises on strategic collaboration offering economies of scale and a joined up way of working. Our ambition is to boldly experiment, learn and reflect, responsibly and based on evidence and partnerships, using methods of engagement that address issues of social justice. Here, we report on preliminary case studies exemplifying the impact of our approach, and data relating to achievements and learning between April 2017 and March 2018. Informed by our findings, we propose that our approach has the potential to be replicated elsewhere. Our practice and the beginning of its evaluation lead us to believe that our way of working and model of professional practice – the ‘cycle’ of engagement and involvement – is effective in: addressing our vision of making health research relevant and inclusive for everyone; and embedding and joining up public involvement in a busy and fertile translational health research ecosystem.

    更新日期:2019-11-28
  • How helpful are Patient and Public Involvement strategic documents - Results of a framework analysis using 4Pi National Involvement Standards
    Res. Involv. Engagem. (IF 0) Pub Date : 2019-11-04
    Rachel Matthews; Meerat Kaur; Catherine French; Alison Baker; Julie Reed

    Patient and Public Involvement (PPI) strategic documents are viewed as an essential feature of organisational commitment to openness and transparency. They provide a mechanism to communicate opportunities for wider community influence in healthcare. The absence of documentation can be negatively interpreted, for example during regulatory inspection, as a lack of intent by organisations to collaborate with a broad constituency. Published literature paints a confusing picture of rationale and evidence that could provide the foundation for strategic action. This makes it difficult for those responsible for turning goals into meaningful involvement. We investigated how content is presented and organised in strategic documents. This pragmatic study is intended to stimulate reflective practice, promote debate and generate further inquiry with a wide audience. We created and iterated a framework adapted from 4Pi National Involvement Standards to analyse organisational PPI strategic documents against five domains which are principles, purpose, presence, process and impact. Fifteen strategic documents were grouped into four categories (acute care providers; clinical commissioning groups; community healthcare providers; and other) and included for analysis. A matrix was produced. By reading the matrix vertically (down) and horizontally (across), comparisons can be made between 4Pi domains and across organisations. There was no discernible pattern between domains or between organisations. There was variation in the level to which criteria were met. No single strategy fully met the criteria for all five domains of 4Pi National Involvement Standards. The criteria for purpose was fully met in eight strategic documents. Only two documents fully met impact criteria. Four organisations showed better completeness with fully or partially met criteria across five domains. A single organisation partially met the criteria for all domains. The remaining 10 were unable to meet the criteria in at least one domain. Our findings align with published literature that suggests the underpinning rationale for PPI is confusing. A strategic aim is difficult to articulate. Context and complexity are at play making the sharing of generalisable knowledge elusive. We offer further critique about the value of these documents and consider: ‘is there an alternative approach to construct PPI strategy to generate theory, capture learning and evaluate effectiveness at the same time?’ We suggest testing the adoption of programme theory in PPI. The emergent nature and context sensitive features of programme theory enable curiosity, creativity and critical appraisal. It has the potential to release practitioners from the tokenistic cycle of monitoring and reporting and replace this with a richer understanding of ‘what’ works and ‘how’ tied to a ‘why’ – in order to achieve a shared aim that everyone can get behind.

    更新日期:2019-11-28
  • Engaging children and families in pediatric Health Research: a scoping review
    Res. Involv. Engagem. (IF 0) Pub Date : 2019-11-04
    Rachel Flynn; Sarah Walton; Shannon D. Scott

    Patient engagement (PE) in pediatric health services research is challenging due to contextual factors such as busyness of parenting, work schedules, and diverse family structures. This scoping review seeks to comprehensively map current PE strategies with parents and families across existing published pediatric health research literature. We followed Arksey and O’Malley (2005) and Levac et al., (2010) six-stage scoping review process. We conducted the search strategy in Medline, Embase, CINAHL, and Psychinfo databases. Data were extracted from included articles; evidence tables were developed and narrative synthesis was completed. Of 3925 retrieved records, seventeen articles were included in the review. Patient engagement primarily occurred through strategies such as advisory groups, meetings, focus groups and interviews. Strategies were used to engage patients at various levels, for different purposes (e.g., to inform, participate, consult, involve collaborate and/or lead). These strategies were also used at various stages of the research process. Navigating power differences, time and money were commonly reported challenges. Inconsistent terminology plagued (e.g., stakeholder engagement, consumer participation, patient and public involvement, participatory research) this body of literature and clarity is urgently needed. This review offers insights into current PE strategies used in pediatric health services research and offers insight for researchers considering employing PE in the future.

    更新日期:2019-11-28
  • Patient participation in research funding: an overview of when, why and how amongst Dutch health funds
    Res. Involv. Engagem. (IF 0) Pub Date : 2019-11-11
    Willemijn M. den Oudendammer; Jacquelien Noordhoek; Rebecca Y. Abma-Schouten; Lieke van Houtum; Jacqueline E. W. Broerse; Christine W. M. Dedding

    Patient participation in decision-making on health-related research has gained ground. Nineteen Dutch health-related research-funding organisations (HFs) have taken up the challenge to include patients in their funding process. A ‘Patient participation (PP) advisory team’ was set-up, with HF-representatives and patient advocates, who together initiated this study. We provide an overview of when, why, and how PP activities take place in HFs’ funding processes, share main challenges and identify possible solutions. A qualitative research design was used. Data was gathered by questionnaires (n = 14) and semi-structured interviews (n = 18) with HF employees responsible for patient participation, followed by a workshop (n = 27) with involved employees of HFs and key players in PP from national patient organisations and research organisations. A descriptive analysis was used for the questionnaire. A semi-directed content analysis was used for the interviews and the workshop. Three stages can be identified in the funding process in which HFs carry out PP activities: (1) strategic decision-making about focus of research (e.g. shared research agendas); (2) call for and receipt of research proposals (e.g. mandatory inclusion of letter of recommendation from patient organisation); (3) decision-making about the funding of research proposals (e.g. patients reside in a patient panel to co-review research proposals). Main challenges identified to carry out PP activities include: how to accommodate diversity of the patient body (mainly encountered in stage 1 and 3); to what extent should patients receive training to successfully participate (mainly encountered in stage 1 and 3); and who is responsible for patient-researcher dialogues (mainly encountered in stage 1 and 2). All nineteen HFs agree that patients should be included in at least one stage of the funding process for health-related research. CONCLUSION: Further broadening and optimising patient involvement is still needed. The proposed solutions to the identified challenges could serve as inspiration for national and international research funding foundations that aim to structurally include patients in their funding process.

    更新日期:2019-11-28
  • Combining qualitative research with PPI: reflections on using the person-based approach for developing behavioural interventions
    Res. Involv. Engagem. (IF 0) Pub Date : 2019-11-14
    Ingrid Muller; Miriam Santer; Leanne Morrison; Kate Morton; Amanda Roberts; Cathy Rice; Marney Williams; Lucy Yardley

    The value and importance of qualitative research and Patient and Public Involvement (PPI) for developing complex health interventions is widely recognised. However, there is often confusion between the two, with researchers relying on just one of these approaches, rather than using the two alongside one another. The Person-Based Approach (PBA) to developing health-related behaviour change interventions adapts and integrates methods from user-centred design and qualitative research. The PBA involves qualitative research at multiple stages of interventions to ensure they are acceptable, feasible, meaningful, and optimally engaging to the people who will use them. The qualitative research is carried out with research participants from a target population, who have no prior or continuing involvement in the wider research process and see the intervention from a fresh perspective. This enables in-depth understanding of the views and experiences of a wide range of target users and the contexts within which they engage with behavioural change. PPI in research is carried out with or by members of the public and is a key part of the research process. PPI contributors are involved at all stages of research design and interpretation. PPI provides input into interventions as members of the research team alongside other stakeholders, such as health professionals and behaviour change experts. We advocate using qualitative research alongside PPI at all stages of intervention planning, development, and evaluation. We illustrate this with examples from recent projects developing complex health interventions, highlighting examples where PPI and PBA have pulled in different directions and how we have approached this, how PPI have helped optimise interventions based on PBA feedback, and how we have engaged PPI in community settings. PPI provides a valuable alternative to the traditional researcher-led approaches, which can be poorly matched to the needs of target users. Combining PPI with the PBA can help to create optimally engaging interventions by incorporating a greater diversity of feedback than would have been possible to achieve through PPI or qualitative approaches alone.

    更新日期:2019-11-28
  • PPI in research: a reflection from early stage researchers
    Res. Involv. Engagem. (IF 0) Pub Date : 2019-11-19
    Alice M. Biggane; Maria Olsen; Paula R. Williamson

    The importance of patient and public involvement (PPI) in the design and conduct of health research projects is gaining widespread recognition; however, it is still a developing area. Furthermore, PPI in methodological health research can help increase research value Thus, it is of great importance that researchers, especially early stage researchers continue to discuss and learn about the future challenges and opportunities of PPI. With this commentary, we aim to disseminate i) key messages from a recent PPI training event and ii) discuss what early stage researchers (ESRs) in the “Methods in Research on Research” (MiRoR) project can do to improve our current and future work by considering and incorporating PPI. The latest MiRoR network meeting held at the University of Split in Croatia (2nd-3rd October), included a PPI training session with presentations from Mr. Stephens a patient, about “Waste in research” and Dr. Westmore a funder on “Research integrity”, followed by smaller round-table discussions. This provided early stage researchers (ESRs) with an opportunity to discuss and explore the benefits and challenges of PPI in research, and the appropriate questions and research that is required for improving the implementation of PPI in clinical research. As with intervention research, PPI is also important for methodological research since this will help to increase both the value, integrity and quality of research. By providing early stage researchers with appropriate educational, interactive and real-world training, this will introduce the various merits and challenges associated with PPI in early-stage research.

    更新日期:2019-11-28
  • Patients’ experience of communication and handling of symptomatic adverse events in breast cancer patients receiving adjuvant chemotherapy
    Res. Involv. Engagem. (IF 0) Pub Date : 2019-11-20
    Christina Witt Bæksted; Aase Nissen; Ann S. Knoop; Helle Pappot

    The study is based on a national cluster randomized trial investigating the effect of electronic patient-reported outcomes (ePRO) on treatment outcomes in breast cancer patients receiving adjuvant chemotherapy. All 13 oncology departments (11 clusters) treating breast cancer patients in Denmark were randomized to use electronic patient-reported outcomes with real-time clinician feedback (ePRO arm) to track symptoms or usual care for eliciting symptoms using a short paper tracking list (usual care arm). The impact of ePRO on clinical outcomes were examined, which is reported elsewhere. The purpose of the present study was to examine patient-reported experience measure (PREM) regarding communication and handling of side effects/symptoms. For this sub-study, patient representatives were involved in the development of a PREM questionnaire. Patients enrolled in the cluster randomized trial completed the PREM questionnaire at their last treatment visit. Semi-structured telephone-interviews were performed with a subgroup of patients. The interviews were based on an interview guide comprised of the questions from the PREM questionnaire and aimed to elaborate on the PREM questionnaire data. A 12 item PREM questionnaire was developed in partnership with patient representatives. In total, 439 out of 682 patients (64.4%) included patients completed the PREM questionnaire. Telephone semi-structured interviews were performed with 22 patients. In total, 52% (ePRO arm) and 65% (usual care arm) reported having talked with the oncologist/nurse about their responses in the tracking systems before each chemotherapy cycle. Fewer patients in the ePRO arm compared to the usual care arm experienced side effects/symptoms not included in the side effect questionnaire. Patients experienced high satisfaction with oncologists’ and nurses’ handling of side effects/symptoms. Patients experienced high satisfaction with oncologists’ and nurses’ handling of chemotherapy adverse events. The study indicates a need for a more comprehensive side effect questionnaire as tracking system covering more symptoms than the one used in usual care today. Clinicaltrials.gov identifier NCT02996201. Registered 19 December 2016, retrospectively registered.

    更新日期:2019-11-28
  • Move the north: evaluation of a regional stakeholder engagement initiative to support the development of a community-partnered physical activity research agenda
    Res. Involv. Engagem. (IF 0) Pub Date : 2019-11-27
    Chelsea Pelletier; Anne Pousette; Gloria Fox; Robin Keahey; Kirsten Ward; Guy Faulkner; Drona Rasali; Sandra Allison

    Although it is generally accepted that engaging with members of the public contributes to more actionable and relevant research, there are a limited number of reported evaluations of community engagement initiatives. Certain populations, such as those with lower socioeconomic status and those who live in rural or dispersed communities, tend to face increased barriers to engagement. For researchers and community members alike, it is important to understand and evaluate engagement initiatives to support participatory research methods, particularly when working with underserved or hard to reach populations. Over 2-days in October 2018, we hosted a Research Agenda Development Workshop and Physical Activity Summit with relevant researchers, health professionals, and community partners. The objectives of this initiative were to develop a physical activity research agenda based on community-identified priorities, create networking opportunities, and understand factors impacting physical activity participation in communities across northern British Columbia (BC). An evaluation plan was created early in the planning process to understand the reach of the event based on representation targets. Stakeholder satisfaction with the event was evaluated with a post-meeting survey. The event was successful in engaging community members from a broad geographic region with at least 90 people in attendance from 11 different northern BC communities, representing 46 different organizations. Meeting attendees indicated they were satisfied with the event and felt their perspectives were heard. To advance physical activity in the region, the most commonly desired outcome from the event was the need for ongoing communication channels to support knowledge translation and capacity building in the low-resourced communities of northern BC. There were some gaps in representation targets present at the event. Namely, there were a limited number of people representing Indigenous organizations, and the education and private sectors. This two-day event was successful at achieving its objectives and engaged a diverse group of stakeholders from a broad geographic region. The outcomes from this event are being used to develop a community-partnered physical activity research agenda and contribute to ongoing learning by the research team to understand contextual factors influencing physical activity in the communities of northern BC. This model of engagement could be used by other researchers interested in engaging with a diverse, multi-sector group of academics, health professionals and community members to support community-centered population health research.

    更新日期:2019-11-28
  • Correction to: Understanding Plain English Summaries: A Comparison of two Approaches to Improve the Quality of Plain English Summaries in Research.
    Res. Involv. Engagem. (IF 0) Pub Date : 2017-12-23
    Emma Kirkpatrick,Wendy Gaisford,Elaine Williams,Elizabeth Brindley,Doreen Tembo,David Wright

    [This corrects the article DOI: 10.1186/s40900-017-0064-0.].

    更新日期:2019-11-01
  • Tailoring and field-testing the use of a knowledge translation peer support shared decision making strategy with First Nations, Inuit and Métis people making decisions about their cancer care: a study protocol.
    Res. Involv. Engagem. (IF 0) Pub Date : 2018-03-07
    Janet Jull,Maegan Mazereeuw,Amanada Sheppard,Alethea Kewayosh,Richard Steiner,Ian D Graham

    Plain English summary Tailoring and testing a peer support decision making strategy with First Nations, Inuit and Métis people making decisions about their cancer care: A study protocol.First Nations, Inuit and Métis (FNIM) people face higher risks for cancer compared to non-FNIM populations. They also face cultural barriers to health service use. Within non-FNIM populations an approach to health decision making, called shared decision making (SDM), has been found to improve the participation of people in their healthcare. Peer support with SDM further improves these benefits. The purpose of this study is to tailor and test a peer support SDM strategy with community support workers to increase FNIM people's participation in their cancer care.This project has two phases that will be designed and conducted with a Steering Committee that includes members of the FNIM and cancer care communities. First, a peer support SDM strategy will be tailored to meet the needs of cancer system users who are receiving care in urban settings, and training in the SDM strategy developed for community support workers. Three communities will be supported for participation in the study and community support workers who are peers from each community will be trained to use the SDM strategy.Next, each community support worker will work with a community member who has a diagnosis of cancer or who has supported a family member with cancer. Each community support worker and community member pair will use the SDM strategy. The participation and experience of the community support worker and community member will be evaluated.The research will be used to develop strategies to support people who are making decisions about their health. Abstract Tailoring and field-testing the use of a knowledge translation peer support shared decision making strategy with First Nations, Inuit and Métis people making decisions about their cancer care: A study protocol Background First Nations, Inuit and Métis ("FNIM") people face increased cancer risks in relation to general populations and experience barriers to health service use. Shared decision making (SDM) has been found to improve peoples' participation and outcomes in healthcare and peer support with SDM further improves these benefits. The purpose of this study is to tailor and then field test, by and with FNIM communities, a peer support SDM strategy for use in cancer care. Methods This project has 2 theory-driven phases and 5 stages (a-e). A core research team that includes members of the Aboriginal Cancer Control Unit of Cancer Care Ontario communities and academic researchers, will work with a Steering Committee. In phase 1, (stage a) a peer support SDM strategy will be tailored to meet the needs of cancer system users who are receiving care in urban settings and (stage b), training developed that will i) introduce participant communities to SDM, and ii) train community support workers (CSWs) within these communities. Next (stage c), three communities will be approached for voluntary participation in the study. These communities will be introduced to SDM in community meetings, and if in agreement then CSWs from each community will be recruited to participate in the study. One volunteer CSW from each community will be trained to use the peer support SDM strategy to enable phase 2 (field test of the peer support SDM strategy).During phase 2 (stage d), each CSW will be matched to a volunteer community member who has had a diagnosis of cancer or has supported a family member with cancer and is familiar with Ontario cancer systems. Each CSW-community member pair (3 to 4 pairs/community) will use the tailored peer support SDM strategy; their interaction will be audio-recorded and their participation and experience evaluated (total of 9 to 12 interviews). As well (stage e), data will be collected on health systems' factors related to the use of the peer support SDM strategy. Discussion Findings will develop peer support SDM strategies to enhance participation of FNIM people in cancer care decisions, advance knowledge translation science, and support a proposal to conduct a multi-site implementation trial.

    更新日期:2019-11-01
  • Taking patient reported outcomes centre stage in cancer research - why has it taken so long?
    Res. Involv. Engagem. (IF 0) Pub Date : 2018-07-25
    Peter Selby,Galina Velikova

    Plain English summary Roger Wilson challenged cancer professionals in research and care to place the patient perspective and patient reported outcome measures centre stage. The ability to collect information from patients using structured questionnaires (known as Patient Reported Outcome Measures or PROMs) which ask about clinical issues (such as disease symptoms or treatment side-effects) as well as social, emotional and psychological issues has existed for 40 years. They provide a powerful way of working out whether an aspect of diagnosis or treatment for cancer is bringing real benefits to patients that can be measured using these structured questionnaires. When they are used, studies and cancer service developments are clearly constrained to focus on what matters to patients rather than, perhaps what matters to health service professionals or recent exciting but perhaps relatively unproven new technologies. There is good evidence that PROMs can contribute valuable inputs into the results of randomised controlled trials, clinical consultations and surveys of whole populations even at a national level. However, there is a great deal more work to be done on methodology and perhaps to change attitudes and cultures within the healthcare professions before they can deliver all of their potential to bring benefits to cancer patients. Abstract In response to Roger Wilson's challenge to place a patient-centred approach using Patient Reported Outcome Measures (PROMs) across all of the patient pathway, we have summarised progress over 40 years. We have critically evaluated what has been achieved to use patient reported outcomes in randomised controlled trials, in routine clinical practice and in population surveys. We conclude that there has been substantial scientific progress but that it has, arguably, been relatively slow. Barriers to placing PROMs centre stage in all of these areas of activity remain in methodology and to a degree in professional attitudes and culture. Active research programmes on methodology and closer working between healthcare professionals, cancer patients and patient advocates are the key requirements to speed up the use and application of PROMs and which should bring benefits to cancer patients and healthcare services.

    更新日期:2019-11-01
  • Taking patient and public involvement online: qualitative evaluation of an online forum for palliative care and rehabilitation research.
    Res. Involv. Engagem. (IF 0) Pub Date : 2018-05-11
    Lisa Jane Brighton,Sophie Pask,Hamid Benalia,Sylvia Bailey,Marion Sumerfield,Jana Witt,Susanne de Wolf-Linder,Simon Noah Etkind,Fliss E M Murtagh,Jonathan Koffman,Catherine J Evans

    Plain English summary Patient and public involvement (PPI) is increasingly recognised as important in research. Most PPI takes place face-to-face, but this can be difficult for people who are unwell or have caring responsibilities. As these challenges are particularly common in palliative care and rehabilitation research, we developed an online forum for PPI: www.csipublicinvolvement.co.uk. In this study, we explored how well the online forum worked, if it is a suitable method for PPI, and how PPI members and researchers reacted to using it. We used an existing theory about online interventions to help choose the 'right' questions to ask participants. We invited PPI members and researchers who had used the online forum to participate in focus groups, and identified the most important themes discussed. Within this study, PPI members have helped with the interview questions, analysis, and write up. Overall, four PPI members and five researchers participated in the focus groups. Participants felt the online forum worked well and had multiple benefits. From the discussions, we identified four key questions to consider when developing online methods for PPI: how does the forum work, how does it engage people, how does it empower people, and what is the impact? Participants suggested the forum could be improved by being more PPI and less researcher focused. We conclude that when developing online methods of PPI, a functioning forum is not enough: it also needs to be engaging and empowering to have an impact. Future work can use these four domains when developing their own online PPI methods. Abstract Background Patient and public involvement (PPI) in research is increasingly recognised as important. Most PPI activities take place face-to-face, yet this can be difficult for people with ill health or caring responsibilities, and may exclude people from hard-to-reach populations (e.g. living in vulnerable social circumstances and/or remote geographical locations). These challenges are particularly pertinent in palliative care and rehabilitation research where people often live with, or care for someone with, advanced illness. In response to this, we aimed to test the functionality, feasibility, and acceptability of an online forum for PPI for palliative care and rehabilitation research (www.csipublicinvolvement.co.uk). Methods We conducted separate focus groups with PPI members and researchers who had used the online forum. Data collection was underpinned by DeLone and Mclean's model of information systems success. Focus groups were recorded, transcribed, and analysed using inductive thematic analysis. Dual coding by two authors ensured rigour, and attention was paid to divergent cases. Results Four PPI members and five researchers participated in the focus groups (two PPI focus groups, one researcher focus group). The online forum was perceived as functional, feasible, and acceptable. Our analysis identified four key questions to consider when developing online methods for PPI: (1) how does the forum work, (2) how does it engage people, (3) how does it empower people, and (4) what is the impact? PPI members felt that the online forum was too researcher led, and needed to be more PPI focussed. Conclusions When developing online methods of PPI, a functioning forum is not enough: it also needs to be engaging and empowering to have an impact. To optimise online involvement, future work should refer to these four domains and balance the needs of researchers and PPI members.

    更新日期:2019-11-01
  • "Is all the stuff about neurons necessary?" The development of lay summaries to disseminate findings from the Newcastle Cognitive Function after Stroke (COGFAST) study.
    Res. Involv. Engagem. (IF 0) Pub Date : 2017-10-25
    Sarah Barnfield,Alison Clara Pitts,Raj Kalaria,Louise Allan,Ellen Tullo

    PLAIN ENGLISH SUMMARY Why did we do this study? It can be difficult for scientists to communicate their research findings to the public. This is partly due to the complexity of translating scientific language into words that the public understand. Further, it may be hard for the public to find out about and locate information about research studies. We aimed to adapt some scientific articles about the links between dementia and stroke into lay summaries to be displayed online for the general public. How did we do it? We collaborated with five people from a volunteer organisation, VOICENorth. They took part in two group discussions about studies reporting on the link between dementia and stroke, and selected four studies to translate into lay summaries and display on a website. We discussed the layout and language of the summaries and made adaptations to make them more understandable to the general public. What did we find? We were able to work with members of the public to translate research findings into lay summaries suitable for a general audience. We made changes to language and layout including the use of 'question and answer' style layouts, the addition of a reference list of scientific terms, and removing certain words. What does this mean? Working with members of the public is a realistic way to create resources that improve the accessibility of research findings to the wider public. ABSTRACT Background Scientific research is often poorly understood by the general public and difficult for them to access. This presents a major barrier to disseminating and translating research findings. Stroke and dementia are both major public health issues, and research has shown lifestyle measures help to prevent them. This project aimed to select a series of studies from the Newcastle Cognitive Function after Stroke cohort (COGFAST) and create lay summaries comprehensible and accessible to the public. Methods We used a focus group format to collaborate with five members of the public to review COGFAST studies, prioritise those of most interest to the wider public, and modify the language and layout of the selected lay summaries. Focus groups were audio-taped and the team used the data to make iterative amendments, as suggested by members of the public, to the summaries and to a research website. We calculated the Flesch reading ease and Flesch-Kincaid grade level for each summary before and after the changes were made. Results In total, we worked with five members of the public in two focus groups to examine draft lay summaries, created by researchers, relating to eight COGFAST studies. Members of the public prioritised four COGFAST lay summaries according to the importance of the topic to the general public. We made a series of revisions to the summaries including the use of 'question and answer' style layouts, the addition of a glossary, and the exclusion of scientific jargon. Group discussion highlighted that lay summaries should be engaging, concise and comprehensible. We incorporated suggestions from members of the public into the design of a study website to display the summaries. The application of existing quantitative tools to estimate readability resulted in an apparently paradoxical increase in complexity of the lay summaries following the changes made. Conclusion This study supports previous literature demonstrating challenges in creating generic guidelines for researchers to create lay summaries. Existing quantitative metrics to assess readability may be inappropriate for assessing scientific lay summaries. We have shown it is feasible and successful to involve members of the public to create lay summaries to communicate the findings of complex scientific research. Trial registration Not applicable to the lay summary project.

    更新日期:2019-11-01
  • The prevalence of patient engagement in published trials: a systematic review.
    Res. Involv. Engagem. (IF 0) Pub Date : 2018-05-26
    Dean Fergusson,Zarah Monfaredi,Kusala Pussegoda,Chantelle Garritty,Anne Lyddiatt,Beverley Shea,Lisa Duffett,Mona Ghannad,Joshua Montroy,M. Hassan Murad,Misty Pratt,Tamara Rader,Risa Shorr,Fatemeh Yazdi

    Plain English summary With the growing movement to engage patients in research, questions are being asked about who is engaging patients and how they are being engaged. Internationally, research groups are supporting and funding patient-oriented research studies that engage patients in the identification of research priorities and the design, conduct and uptake of research. As we move forward, we need to know what meaningful patient engagement looks like, how it benefits research and clinical practice, and what are the barriers to patient engagement?We conducted a review of the published literature looking for trials that report engaging patients in the research. We included both randomized controlled trials and non-randomized comparative trials. We looked at these trials for important study characteristics, including how patients were engaged, to better understand the practices used in trials. Importantly, we also discuss the number of trials reporting patient engagement practices relative to all published trials. We found that very few trials report any patient engagement activities even though it is widely supported by many major funding organizations. The findings of our work will advance patient-oriented research by showing how patients can be engaged and by stressing that patient engagement practices need to be better reported. Abstract Background Patient-Oriented Research (POR) is research informed by patients and is centred on what is of importance to them. A fundamental component of POR is that patients are included as an integral part of the research process from conception to dissemination and implementation, and by extension, across the research continuum from basic research to pragmatic trials [J Comp Eff Res 2012, 1:181-94, JAMA 2012, 307:1587-8]. Since POR's inception, questions have been raised as to how best to achieve this goal.We conducted a systematic review of randomized controlled trials and non-randomized comparative trials that report engaging patients in their research. Our main goal was to describe the characteristics of published trials engaging patients in research, and to identify the extent of patient engagement activities reported in these trials. Methods The MEDLINE®, EMBASE®, Cinahl, PsycINFO, Cochrane Methodology Registry, and Pubmed were searched from May 2011 to June 16th, 2016. Title, abstract and full text screening of all reports were conducted independently by two reviewers. Data were extracted from included trials by one reviewer and verified by a second. All trials that report patient engagement for the purposes of research were included. Results Of the 9490 citations retrieved, 2777 were reviewed at full text, of which 23 trials were included. Out of the 23 trials, 17 were randomized control trials, and six were non-randomized comparative trials. The majority of these trials (83%, 19/23) originated in the United States and United Kingdom. The trials engaged a range of 2-24 patients/ community representatives per study. Engagement of children and minorities occurred in 13% (3/23) and 26% (6/23) of trials; respectively. Engagement was identified in the development of the research question, the selection of study outcomes, and the dissemination and implementation of results. Conclusions The prevalence of patient engagement in patient-oriented interventional research is very poor with 23 trials reporting activities engaging patients. Research dedicated to determining the best practice for meaningful engagement is still needed, but adequate reporting measures also need to be defined.

    更新日期:2019-11-01
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