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A balancing act: navigating the nuances of co-production in mental health research Res. Involv. Engagem. Pub Date : 2024-03-07 Sophie Soklaridis, Holly Harris, Rowen Shier, Jordana Rovet, Georgia Black, Gail Bellissimo, Sam Gruszecki, Elizabeth Lin, Anna Di Giandomenico
In the context of mental health research, co-production involves people with lived expertise, those with professional or academic expertise, and people with both of these perspectives collaborating to design and actualize research initiatives. In the literature, two dominant perspectives on co-production emerge. The first is in support of co-production, pointing to the transformative value of co-production
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Engaging adolescents in chronic disease prevention research: insights from researchers about establishing and facilitating a youth advisory group Res. Involv. Engagem. Pub Date : 2024-02-26 Stephanie R. Partridge, Mariam Mandoh, Allyson Todd, Rebecca Raeside
Our comment discusses our experience establishing a youth advisory group focused on chronic disease prevention research. The comment highlights three key learnings: the need for researchers to adapt their working style, the importance of redefining the power dynamics, and disrupting traditional research structures to align with co-researcher engagement models. In this comment, we share our insights
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Sustaining connections: feasibility and impact of long-term virtual patient engagement Res. Involv. Engagem. Pub Date : 2024-02-24 Kelsey Stefanik-Guizlo, Claire Allen, Sarah Brush, Jessica Mogk, Starette Canada, Marina Peck, Kathryn Ramos, Karen Volpe, Paula Lozano
Virtual patient engagement has become more common in recent years. Emerging research suggests virtual engagement can increase accessibility for patients managing long-term health conditions and those living in larger geographic areas, but it can also be challenging to establish relationships and maintain engagement over time. Little is known about virtual engagement lasting more than two years, nor
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Conversation for change: engaging older adults as partners in research on gerotechnology Res. Involv. Engagem. Pub Date : 2024-02-20 Jessica Bytautas, Alisa Grigorovich, Judith Carson, Janet Fowler, Ian Goldman, Bessie Harris, Anne Kerr, Ashley-Ann Marcotte, Kieran O’Doherty, Amanda Jenkins, Susan Kirkland, Pia Kontos
There is increasing research and public policy investment in the development of technologies to support healthy aging and age-friendly services in Canada. Yet adoption and use of technologies by older adults is limited and rates of abandonment remain high. In response to this, there is growing interest within the field of gerotechnology in fostering greater participation of older adults in research
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Co-producing an online patient public community research hub: a qualitative study exploring the perspectives of national institute for health research (NIHR) research champions in England Res. Involv. Engagem. Pub Date : 2024-02-16 Eleanor Hoverd, Sophie Staniszewska, Jeremy Dale, Rachel Spencer, Anne Devrell, Dena Khan, Carrol Lamouline, Sanya Saleem, Pam Smith
Patient and Public Involvement and Engagement (PPIE) should be embedded as part of researchers’ everyday practice. However, this can be challenging. Creating a digital presence for PPIE as part of Higher Education Institutes’ (HEIs) infrastructure may be one way of supporting this. This can support how information is made available to patients and members of the public, but relatively little is known
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Protocol for co-producing a framework and integrated resource platform for engaging patients in laboratory-based research Res. Involv. Engagem. Pub Date : 2024-02-12 Manoj M. Lalu, Dawn Richards, Madison Foster, Brittany French, Angela M. Crawley, Kirsten M. Fiest, Kathryn Hendrick, Kimberly F. Macala, Asher A. Mendelson, Pat Messner, Stuart G. Nicholls, Justin Presseau, Cheryle A. Séguin, Patrick Sullivan, Bernard Thébaud, Dean A. Fergusson
Patient engagement in research is the meaningful and collaborative interaction between patients and researchers throughout the research process. Patient engagement can help to ensure patient-oriented values and perspectives are incorporated into the development, conduct, and dissemination of research. While patient engagement is increasingly prevalent in clinical research, it remains relatively unrealized
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What motivates public collaborators to become and stay involved in health research? Res. Involv. Engagem. Pub Date : 2024-02-12 Toril Beate Røssvoll, Kristin Liabo, Tove Aminda Hanssen, Jan H. Rosenvinge, Elisabeth Sundkvist, Gunn Pettersen
People with lived experience of health and illness are increasingly being involved in research. Knowing what creates interest in becoming involved in health research may help identify appropriate ways of facilitating meaningful involvement. The study aimed to investigate why people became public collaborators in health research and what helped sustain their commitment to staying involved. Semistructured
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Discussing the gaps in the science and practice of lived experience engagement in mental health and substance use research: results of knowledge mobilization activities Res. Involv. Engagem. Pub Date : 2024-02-10 Lisa D. Hawke, Faith Rockburne, Melissa Hiebert, Connie Putterman, Natasha Y. Sheikhan
Engaging people with lived experience of mental health or substance use challenges and family members (PWLE) improves the quality and relevance of the associated research, but it can be challenging to include them meaningfully and authentically in the work. After reviewing the literature on the science of lived experience engagement, we held two knowledge mobilization events to translate the findings
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Engaging critically: exploring the varying roles of lived experience advisors in an implementation science study on management of opioid prescribing Res. Involv. Engagem. Pub Date : 2024-02-09 Emily Nicholas Angl, Celia Laur, Michael Strange, Barbara Sklar, Mina Tadrous, Noah Ivers
Involvement of individuals with lived experience, also called “patient partners”, is a key element within implementation science, the study of how to put evidence into practice. While conducting a 4-year implementation study focused on improving physician management of opioid prescribing, our research team worked closely with Lived Experience Advisors (LEAs). LEAs were involved throughout the study
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Evaluation of an integrated knowledge translation approach used for updating the Cochrane Review of Patient Decision Aids: a pre-post mixed methods study Res. Involv. Engagem. Pub Date : 2024-02-09 Krystina B. Lewis, Maureen Smith, Dawn Stacey, Meg Carley, Ian D. Graham
When people who can use or benefit from research findings are engaged as partners on study teams, the quality and impact of findings are better. These people can include patients/consumers and clinicians who do not identify as researchers. They are referred to as “knowledge users”. This partnered approach is called integrated knowledge translation (IKT). We know little about knowledge users’ involvement
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Co-designing a personalised care plan for patients with rectal cancer: reflections and practical learnings Res. Involv. Engagem. Pub Date : 2024-02-08 Grace Gard, Jo Oakley, Kelsey Serena, Karla Gough, Michael Harold, Katya Gray, Helen Anderson, Judi Byrne, Jo Cockwill, Graeme Down, George Kiossoglou, Peter Gibbs
Consumer involvement is considered an essential component of contemporary cancer research, with a movement towards participatory methods, to the benefit of consumers and researchers. Overall, in-depth research on participant experiences and perceptions of their co-designer role—and how these may (or may not) change during a co-design project—is limited. The purpose of this paper was to synthesise the
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A framework for more equitable, diverse, and inclusive Patient and Public Involvement for palliative care research Res. Involv. Engagem. Pub Date : 2024-02-08 Sarah Mitchell, Nicola Turner, Kate Fryer, Jude Beng, Margaret E. Ogden, Melanie Watson, Clare Gardiner, Joanne Bayly, Katherine E. Sleeman, Catherine J. Evans
There are marked inequalities in palliative care provision. Research is needed to understand how such inequalities can be addressed, so that everyone living with advanced illness can receive the care they need, when they need it. Research into inequalities in palliative care should be guided by Patient and Public Involvement (PPI) that includes people from diverse backgrounds, who are less likely to
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Lessons learned in measuring patient engagement in a Canada-wide childhood disability network Res. Involv. Engagem. Pub Date : 2024-02-07 Tatiana Ogourtsova, Miriam Gonzalez, Alix Zerbo, Frank Gavin, Keiko Shikako, Jonathan Weiss, Annette Majnemer
The CHILD-BRIGHT Network, a pan-Canadian childhood disability research Network, is dedicated to patient-oriented research, where numerous stakeholders, including patient-partners, researchers, and clinicians are involved at different levels. The Network is committed to continuously improving the level of engagement and partnerships’ impact. Measuring patient engagement is therefore important in reflecting
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Navigating meaningful engagement: lessons from partnering with youth and families in brain-based disability research Res. Involv. Engagem. Pub Date : 2024-02-05 Linda Nguyen, Kinga Pozniak, Sonya Strohm, Jessica Havens, Claire Dawe-McCord, Donna Thomson, Connie Putterman, Dana Arafeh, Barb Galuppi, Alicia Via-Dufresne Ley, Shelley Doucet, Khush Amaria, Adrienne H. Kovacs, Ariane Marelli, Ronen Rozenblum, Jan Willem Gorter
While patient and family engagement in research has become a widespread practice, meaningful and authentic engagement remains a challenge. In the READYorNot™ Brain-Based Disabilities Study, we developed the MyREADY Transition™ Brain-Based Disabilities App to promote education, empowerment, and navigation for the transition from pediatric to adult care among youth with brain-based disabilities, aged
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Involving people with lived experience of homelessness in palliative and end of life care research: key considerations from experts in the field Res. Involv. Engagem. Pub Date : 2024-01-30 Jodie Crooks, Kate Flemming, Caroline Shulman, Emma Casey, Briony Hudson
Co-production of research aims to include people with lived experience of a phenomena throughout the research process. People experiencing homelessness often experience advance ill-health at a young age, yet access palliative care services at a disparately low rate to the level of palliative care need. The voices of people experiencing homelessness are infrequently heard throughout palliative care
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Exploring Elinor Ostrom's principles for collaborative group working within a user-led project: lessons from a collaboration between researchers and a user-led organisation Res. Involv. Engagem. Pub Date : 2024-01-29 Bella Wheeler, Oli Williams, Becki Meakin, Eleni Chambers, Peter Beresford, Sarah O’Brien, Glenn Robert
Some research has been undertaken into the mechanisms that shape successful participatory approaches in the context of efforts to improve health and social care. However, greater attention needs to be directed to how partnerships between researchers and user-led organisations (ULOs) might best be formed, practiced, managed, and assessed. We explored whether political economist Elinor Ostrom’s Nobel
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Four year evaluation of a parent advisory group to support a research program for knowledge translation in child health Res. Involv. Engagem. Pub Date : 2024-01-28 Lisa Hartling, Sarah A. Elliott, Annie Mabbott, Julie Leung, Kathleen Shearer, Chrissy Smith, Shannon D. Scott
In 2016, we developed a pediatric parent advisory group to inform our research program which creates innovative knowledge translation (KT) tools for parents on priority topics related to acute childhood illness. We implemented a mixed methods strategy to evaluate the experiences of group members. The purpose of this paper is to present the findings from parent evaluations over four years and to discuss
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Researcher and patient experiences of co-presenting research to people living with systemic sclerosis at a patient conference: content analysis of interviews Res. Involv. Engagem. Pub Date : 2024-01-27 Amanda Wurz, Kelsey Ellis, Julia Nordlund, Marie-Eve Carrier, Vanessa Cook, Amy Gietzen, Claire Adams, Elsa-Lynn Nassar, Danielle B. Rice, Catherine Fortune, Genevieve Guillot, Tracy Mieszczak, Michelle Richard, Maureen Sauve, Brett D. Thombs
Patient engagement in research is important to ensure research questions address problems important to patients, that research is designed in a way that can effectively answer those questions, and that findings are applicable, relevant, and credible. Yet, patients are rarely involved in the dissemination stage of research. This study explored one way to engage patients in dissemination, through co-presenting
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Engagement of vulnerable communities in HIV prevention research in India: a qualitative investigation Res. Involv. Engagem. Pub Date : 2024-01-25 Venkatesan Chakrapani, Vijayalakshmi Loganathan, Paromita Saha, Devi Leena Bose, Nabeela Khan, Tiara Aurora, Jyoti Narayan, Joyeeta Mukherjee, Saif ul Hadi, Chitrangna Dewan
Meaningful community engagement (CE) in HIV prevention research is crucial for successful and ethically robust study implementation. We conducted a qualitative study to understand the current CE practices in HIV prevention research and to identify expressed and implicit reasons behind translational gaps highlighted by communities and researchers. For this exploratory qualitative study, we recruited
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“They should’ve talked to us more”: lay health advisors’ experiences with community-engaged hypertension research Res. Involv. Engagem. Pub Date : 2024-01-25 Cyleste C. Collins, Mona Shediac-Rizkallah, Jacqueline Dolata, Erika Hood, Elodie Nonguierma, Daryl Thornton
Lay health advisors (LHAs) are increasingly being used to increase patient and public involvement in research, disseminate health information, and work toward preventing health disparities within communities at risk. This research explored LHAs’ experiences with training and recruiting for a hypertension research project which ended due to minimal enrollment. The methodological design was qualitative
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Advancing patient-centered research practices in a pragmatic patient-level randomized clinical trial: A thematic analysis of stakeholder engagement in Emergency Medicine Palliative Care Access (EMPallA) Res. Involv. Engagem. Pub Date : 2024-01-23 Nicole Zhao, Allison M. Cuthel, Owen Storms, Raina Zhang, Rebecca Liddicoat Yamarik, Jacob Hill, Regina Kaur, Kaitlyn Van Allen, Mara Flannery, Alex Chang, Frank Chung, Sumeet Randhawa, Isabel Castro Alvarez, Angela Young-Brinn, Constance L. Kizzie-Gillett, Dawn Rosini, Eric D. Isaacs, Ernest Hopkins, Garrett K. Chan, Juanita Booker-Vaughns, Margaret Maguire, Martha Navarro, Neha Reddy Pidatala, Patrick
Involving patient and community stakeholders in clinical trials adds value by ensuring research prioritizes patient goals both in conduct of the study and application of the research. The use of stakeholder committees and their impact on the conduct of a multicenter clinical trial have been underreported clinically and academically. The aim of this study is to describe how Study Advisory Committee
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Disseminating the research findings from the adolescents and adults living with Perinatal HIV (AALPHI) study: an approach from young people living with HIV Res. Involv. Engagem. Pub Date : 2024-01-18 Kate Sturgeon, Ali Judd, Tom Burke, Caroline Foster, Diana M. Gibb, Marthe Le Prevost, Warren Mhizha, Conor D. Tweed
The Adolescents and Adults Living with Perinatal HIV (AALPHI) study is one of only three cohort studies worldwide evaluating the impact of HIV on young people living with perinatal HIV (PLHIV) relative to a comparable group of HIV negative young people in close relationship with an HIV positive individual, for example, their mother, sibling or partner. This project aimed to engage young people with
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Involving patients and clinicians in the development of a randomised clinical trial protocol to assess spinal manual therapy versus nerve root injection for patients with lumbar radiculopathy: a patient and public involvement project to inform the SALuBRITY trial design Res. Involv. Engagem. Pub Date : 2024-01-17 Corina Ryf, Léonie Hofstetter, Lauren Clack, Cesar A. Hincapié
Spinal manual therapy and corticosteroid nerve root injection are commonly used to treat patients with lumbar radiculopathy. The SALuBRITY trial—a two parallel group, double sham controlled, randomised clinical trial—is being developed to compare their effectiveness. By gathering patients’ and clinicians’ perspectives and involving them in discussions related to the trial research question and objectives
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Activity provider-facilitated patient and public involvement with care home residents Res. Involv. Engagem. Pub Date : 2024-01-11 Kerry Micklewright, Anne Killett, Gizdem Akdur, Priti Biswas, Pamela Blades, Lisa Irvine, Liz Jones, Julienne Meyer, Natalie Ravenscroft, Hilary Woodhead, Claire Goodman
In care home research, residents are rarely included in patient and public involvement and engagement (PPIE) despite their lived experiences of day-to-day care. This paper reports on a novel approach to PPIE, developed in response to Covid-19, and utilised in a large UK-based study focused on care homes. PPIE sessions were facilitated on behalf of the research team by Activity Providers (APs) already
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Research collaboration with older people as a matter of scientific quality and ethics: a focus group study with researchers in ageing and health Res. Involv. Engagem. Pub Date : 2024-01-10 Synneve Dahlin-Ivanoff, Isak Berge, Emmelie Barenfeld, Maria Haak, Qarin Lood
Society is placing increasing demands on collaboration with actors outside the academia to be involved in the research process, and the responsibility for turning this into reality lies with the researchers. As research collaboration is a way to increase the societal relevance of research and since older people have the right to be actively involved in research that concerns them, this study is addressed
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Correction to: The value of co-creating a clinical outcome assessment strategy for clinical trial research: process and lessons learnt Res. Involv. Engagem. Pub Date : 2024-01-09 Thomas Morel, Karlin Schroeder, Sophie Cleanthous, John Andrejack, Geraldine Blavat, William Brooks, Lesley Gosden, Carroll Siu, Natasha Ratcliffe, Ashley F. Slagle
Correction to: Research Involvement and Engagement (2023) 9:98 https://doi.org/10.1186/s40900-023-00505-7 Following publication of the original article [1], the authors reported errors in reference 13. The revised link in reference 13 has been indicated hereafter. The incorrect reference 13 reads: 13. FDA. Assessment of the use of patient experience data in regulatory decision-making final report.
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Evaluating participant experiences of Community Panels to scrutinise policy modelling for health inequalities: the SIPHER Consortium Res. Involv. Engagem. Pub Date : 2024-01-08 Ellen Stewart, Elizabeth Such
Data-intensive research, including policy modelling, poses some distinctive challenges for efforts to mainstream public involvement into health research. There is a need for learning about how to design and deliver involvement for these types of research which are highly technical, and where researchers are at a distance from the people whose lives data depicts. This article describes our experiences
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Recommendations for successful involvement of patient partners in complex intervention research: a collaborative learning process Res. Involv. Engagem. Pub Date : 2024-01-03 Pernille Christiansen Skovlund, Jeanette Finderup, Sanne Aabo, Flemming Jensen, Henning Søndergaard, Lotte Ørneborg Rodkjær
Patient and public involvement in health-related research is a new discipline in Denmark. In 2021, a national conference titled 'Patient and Public Involvement in Complex Intervention Research' provided a forum for discussion between patient partners, researchers and clinicians on involving patients as partners in complex intervention research. We aimed to describe specific challenges to and initiatives
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Involving parents of children treated for cancer in Sweden as public contributors to inform the design and conduct of an evaluation of internet-administered self-help for parents of children treated for cancer: a protocol Res. Involv. Engagem. Pub Date : 2024-01-02 Joanne Woodford, Christina Reuther, Johan Lars Ljungberg, Louise von Essen
Public contribution in research can facilitate the design and conduct of meaningful research, resulting in feasible and sustainable solutions to healthcare challenges. However, the evidence concerning the acceptability, feasibility, and impact of public contribution in research is limited. We will embed a mixed-method examination of public contribution activities into the CHANGE trial. The overall
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Patient engagement in clinical trial design for rare neuromuscular disorders: impact on the DELIVER and ACHIEVE clinical trials Res. Involv. Engagem. Pub Date : 2024-01-02 Patricia Furlong, Ashish Dugar, Molly White
Engaging individuals living with disease in drug development and regulatory processes leads to more thoughtful and sensitive trial designs, drives more informative and meaningful outcomes from clinical studies, and builds trust between the public, government, and industry stakeholders. This engagement is especially important in the case of rare diseases, where affected individuals and their families
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Comment on “Reflections on patient engagement by patient partners: How it can go wrong” Res. Involv. Engagem. Pub Date : 2023-12-22 Paola Zaratin, Usman Khan, Guendalina Graffigna
As patient-advocacy, public policy and clinical researchers with special knowledge on Responsible Research Innovation (RRI) governance and the public health and psychology underlying patient engagement, we read with interest the comment contribution by Richards et al., “Reflections on patient engagement by patient partners: How it can go wrong” (Richards et al. in Res Involv Engagem 9:41, 2023. https://doi
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Recommended characteristics and processes for writing lay summaries of healthcare evidence: a co-created scoping review and consultation exercise Res. Involv. Engagem. Pub Date : 2023-12-20 Sareh Zarshenas, JoAnne Mosel, Adora Chui, Samantha Seaton, Hardeep Singh, Sandra Moroz, Tayaba Khan, Sherrie Logan, Heather Colquhoun
Lay summaries (LSs) of scientific evidence are critical to sharing research with non-specialist audiences. This scoping review with a consultation exercise aimed to (1) Describe features of the available LS resources; (2) Summarize recommended LS characteristics and content; (3) Outline recommended processes to write a LS; and (4) Obtain stakeholder perspectives on LS characteristics and writing processes
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£25 and a biscuit: Women’s Health Research and Public Engagement in the UK Res. Involv. Engagem. Pub Date : 2023-12-15 Alison Gabrielle Perry, Edward Mullins
It is over a year since the Department of Health launched the Women’s Health Strategy for England and included the rally cry of “women’s voices”. However, methods and modes of the inclusion of women in their own health and health research still fall short. Patient and public engagement and involvement (PPIE) in women’s health research is considered a hallmark of a moral, ethical, and democratic society
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#HowNotToDoPatientEngagement: the engaging with purpose patient engagement framework based on a twitter analysis of community perspectives on patient engagement Res. Involv. Engagem. Pub Date : 2023-12-13 Brianna Dunstan, Francine Buchanan, Alies Maybee, Aisha Lofters, Ambreen Sayani
Evaluation of patient engagement practices are frequently researcher-driven, researcher-funded, and asymmetric in power dynamics. Little to no literature on patient experiences in patient engagement exist that is are not framed by institutionally-driven research inquiries (i.e., from the lens of a research team lead, or healthcare administrative setting). Understanding these perspectives can help us
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Opening up ideas: an advent calendar for patient and public engagement in clinical trials research Res. Involv. Engagem. Pub Date : 2023-12-11 Nicola L. Harman, Kerrie McGiveron, Catrin Tudur Smith, Paula R. Williamson, Heather Barrington
The involvement of patients and the public in research is now an expectation in research with funders requesting a clear plan of involvement and engagement. In the United Kingdom involvement typically focuses on research prioritisation, design and delivery, in contrast activities that share the results of research or research methods more generally are considered to be engagement. Clinical trials tend
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Engaging communities to inform the development of a diverse cohort of cancer survivors: formative research for the eat move sleep study (EMOVES) Res. Involv. Engagem. Pub Date : 2023-12-11 Ghilamichael Andemeskel, Nynikka R. Palmer, Rena Pasick, Erin L. Van Blarigan, Stacey A. Kenfield, Rebecca E. Graff, Michael Shaw, Wil Yu, Mayte Sanchez, Roberto Hernandez, Samuel L. Washington, Salma Shariff-Marco, Kim F. Rhoads, June M. Chan
There are more than 18 million cancer survivors in the United States. Yet, survivors of color remain under-represented in cancer survivorship research (Saltzman et al. in Contemp Clin Trials Commun 29:100986, 2022; Pang et al. in J Clin Oncol 34:3992–3999, 2016; Lythgoe et al. in Prostate Cancer Prostatic Dis 24:1208–1211, 2021). Our long-term goal is to enroll and follow a cohort of historically under-represented
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Evaluating the impact of engaging older adults and service providers as research partners in the co-design of a community mobility-promoting program: a mixed methods developmental evaluation study Res. Involv. Engagem. Pub Date : 2023-12-08 Maggie MacNeil, Julia Abelson, Caroline Moore, Shazelle Lindsay, Janet Adams, Aref Alshaikhahmed, Kamal Jain, Penelope Petrie, Rebecca Ganann
Increasingly researchers are partnering with citizens and communities in research; less is known about research impacts of this engagement. EMBOLDEN is an evidence-informed, mobility-promoting intervention for older adults co-designed by a 26-person Strategic Guiding Council (SGC) of health/social service providers and older adult citizens. This study evaluated research partners’ perceptions of engagement
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Patient Engagement in Research Scale (PEIRS-22): Danish translation, applicability, and user experiences Res. Involv. Engagem. Pub Date : 2023-12-07 Mille Guldager Christiansen, Helle Pappot, Clayon Hamilton, Trine Lund-Jacobsen, Anne Wilhøft Kristensen, Sara Nordentoft, Beverley Lim Høeg, Pernille Bidstrup, Iben Husted Nielsen, Jane Ulstrup, Anouk Kirsten Trip, Mary Jarden, Karin Piil
Patient and Public Involvement (PPI) in health research is gaining increased attention and acceptance worldwide. Reliable measurements are crucial to accurately assess, monitor, and evaluate patient involvement efforts in research. The Patient Engagement in Research Scale (PEIRS-22) measures meaningful patient and family caregiver engagement in research. This study focuses on three primary objectives:
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Striking the right balance: co-designing the Health4Me healthy lifestyle digital health intervention with adolescents Res. Involv. Engagem. Pub Date : 2023-12-07 Rebecca Raeside, Allyson Todd, Sara Wardak, Lauren Gardner, Katrina E. Champion, Melissa Kang, Seema Mihrshahi, Katharine Steinbeck, Julie Redfern, Stephanie R. Partridge
Adolescents are navigating a period of rapid growth and development within an era of digitalization. Mobile phone ownership among adolescents is nearly ubiquitous, and this provides an opportunity to harness text messaging to promote a healthy lifestyle and reduce chronic disease risk factors. Inclusion of adolescents throughout the design process has been recognized as essential for engagement and
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‘Building bridges’: reflections and recommendations for co-producing health research Res. Involv. Engagem. Pub Date : 2023-12-06 Vasiliki Papageorgiou, Lindsay H. Dewa, Jane Bruton, Keitumetse-Kabelo Murray, Nick Hewlett, Wezi Thamm, Husseina Hamza, Pino Frumiento, Robyn Steward, Melissa Bradshaw, Ellie Brooks-Hall, Silvia Petretti, Sarah Ewans, Mark Williams, Dorota Chapko
Co-produced research is when all stakeholders, including experts by experience and researchers, work together to conceptualise, design, deliver and disseminate research to enhance understanding and knowledge. This type of participatory inquiry is being increasingly used across health research; however, it continues to be a complex area to navigate given existing institutional structures. We collaborated
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Implementation and evaluation of participatory advisory boards in mental health research: a research protocol of the ‘PART-Beirat’ project Res. Involv. Engagem. Pub Date : 2023-12-06 Fenia Ferra, Eva Drewelow, Olga Klein, Marcel Daum, Peggy Walde, Kai Gerullis, Ingo Kilimann, Jack Tomlin, Stefan Teipel, Birgit Völlm
The use of participatory research approaches in the field of dementia and forensic mental health research has been on the rise. Advisory board structures, involving people with lived experience (PWLE), have frequently been used for guiding and leading research. Yet, there has been limited guidance on the establishment, retention and use of advisory boards in the field of dementia and forensic mental
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Create to Collaborate: using creative activity and participatory performance in online workshops to build collaborative research relationships Res. Involv. Engagem. Pub Date : 2023-12-06 Alice Malpass, Astrid Breel, Jo Stubbs, Tassos Stevens, Persis-Jadé Maravala, Ellie Shipman, Zoe Banks Gross, Michelle Farr
Creative methods/practices have been highlighted as helpful to develop more collaborative, equitable research partnerships between researchers and communities/public-participants. We asked artist partners to design four online workshops, one on each research priority area: school environments and mental health; wellbeing within the Somali community; air pollution; health data. We aimed to understand
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What matters to you? Engaging with children in the James Lind Alliance Children’s Cancer Priority Setting Partnership Res. Involv. Engagem. Pub Date : 2023-11-30 Susie Aldiss, Penelope Hart-Spencer, Loveday Langton, Sonia Malik, Keeley McEvoy, Jessica E. Morgan, Rosa Reed-Berendt, Rachel Hollis, Bob Phillips, Faith Gibson
Previous priority setting exercises have sought to involve children, but in the final reporting, it is evident that few children had been engaged through the process. A primary aim in the Children’s Cancer Priority Setting Partnership was to find out from children what they want research to focus on. We report on our experience to inform methods of engagement with children in future James Lind Alliance
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Using the UK standards for public involvement to evaluate the public involvement sections of annual reports from NIHR managed research centres Res. Involv. Engagem. Pub Date : 2023-11-30 Alice Moult, Dereth Baker, Ali Aries, Paul Bailey, Steven Blackburn, Tom Kingstone, Saumu Lwembe, Zoe Paskins
Within the United Kingdom (UK), the National Institute for Health and Care Research is the largest funder of health and social care research, and additionally funds research centres that support the development and delivery of research. Each year, award-holders of these research centres are required to write a report about their activities, including a summary of Patient and Public Involvement and
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Young patients’ involvement in a composite endpoint method development on acceptability for paediatric oral dosage forms Res. Involv. Engagem. Pub Date : 2023-11-29 Sibylle Reidemeister, Begonya Nafria Escalera, Daniel Marín, Jan Balayla, Ingrid Klingmann, Viviane Klingmann
In line with the European Paediatric Regulation, the European Medicines Agency (EMA) asks for investigation of a medicine’s acceptability in paediatric medicines development. A standardised acceptability testing method combining the outcome of “swallowability” and “palatability” assessments to a “composite endpoint on acceptability” was recently developed. Before this method’s suitability for selection
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Enhancing evidence-informed policymaking in medicine and healthcare: stakeholder involvement in the Commons Project for rare diseases in Japan Res. Involv. Engagem. Pub Date : 2023-11-29 Atsushi Kogetsu, Moeko Isono, Tatsuki Aikyo, Junichi Furuta, Dai Goto, Nao Hamakawa, Michihiro Hide, Risa Hori, Noriko Ikeda, Keiko Inoi, Naomi Kawagoe, Tomoya Kubota, Shirou Manabe, Yasushi Matsumura, Koji Matsuyama, Tomoko Nakai, Ikuko Nakao, Yuki Saito, Midori Senoo, Masanori P. Takahashi, Toshihiro Takeda, Megumi Takei, Katsuto Tamai, Akio Tanaka, Yasuhiro Torashima, Yuya Tsuchida, Chisato Yamasaki
Although stakeholder involvement in policymaking is attracting attention in the fields of medicine and healthcare, a practical methodology has not yet been established. Rare-disease policy, specifically research priority setting for the allocation of limited research resources, is an area where evidence generation through stakeholder involvement is expected to be effective. We generated evidence for
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Exploring patient and caregiver perceptions of the meaning of the patient partner role: a qualitative study Res. Involv. Engagem. Pub Date : 2023-11-28 Anna Maria Chudyk, Roger Stoddard, Nicola McCleary, Todd A. Duhamel, Carolyn Shimmin, Serena Hickes, Annette S. H. Schultz
The re-conceptualization of patients’ and caregivers’ roles in research from study participants to co-researchers (“patient partners”) has led to growing pains within and outside the research community, such as how to effectively engage patients in research and as part of interdisciplinary teams. To support the growth of more successful research partnerships by developing a shared understanding of
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Embedding formal and experiential public and patient involvement training in a structured PhD programme: process and impact evaluation Res. Involv. Engagem. Pub Date : 2023-11-24 Maria Pierce, Louise Foley, Bridget Kiely, Aisling Croke, James Larkin, Susan M. Smith, Barbara Clyne, Edel Murphy
Incorporating Public and Patient Involvement (PPI) into doctoral research is valued by PhD funders and scholars. Providing early career researchers with appropriate training to develop skills to conduct meaningful PPI involvement is important. The Health Research Board (HRB) Collaborative Doctoral Award in MultiMorbidity programme (CDA-MM) embedded formal PPI training in its structured education. The
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A community-based approach to identifying and prioritising young people’s mental health needs in their local communities Res. Involv. Engagem. Pub Date : 2023-11-23 Ediane Santana de Lima, Cristina Preece, Katie Potter, Ellen Goddard, Julian Edbrooke-Childs, Tim Hobbs, Peter Fonagy
Identifying locally relevant and agreed-upon priorities for improving young people’s mental health, aligned with social and environmental factors, is essential for benefiting target communities. This paper describes a participatory approach to engage young people and professionals in identifying such priorities, whilst considering the social determinants related to them. We utilised a community-based
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Adapting co-design methodology to a virtual environment: co-designing a communication intervention for adult patients in critical care Res. Involv. Engagem. Pub Date : 2023-11-13 Laura Istanboulian, Louise Rose, Yana Yunusova, Craig Dale
Research co-design is recommended to reduce misalignment between researcher and end-user needs and priorities for healthcare innovation. Engagement of intensive care unit patients, clinicians, and other stakeholders in co-design has historically relied upon face-to-face meetings. Here, we report on our co-design processes for the development of a bundled intensive care unit patient communication intervention
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Incorporation of patient and public involvement in statistical methodology research: development of an animation Res. Involv. Engagem. Pub Date : 2023-11-08 Hannah M. Worboys, Jonathan Broomfield, Aiden Smith, Rachael Stannard, Freya Tyrer, Elpida Vounzoulaki, Barbara Czyznikowska, Gurpreet Grewal-Santini, Justin Greenwood, Laura J. Gray
Patient and Public Involvement and Engagement (PPIE) is important to all aspects of health research. However, there are few examples of successful PPIE in statistical methodology research. One of the reasons for this relates to challenges in the identification of individuals interested in statistical methodology research projects, and ambiguities over the importance of PPIE to these projects. This
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World Cafés as a participatory approach to understanding research agendas in primary care with underserved communities: reflections, challenges and lessons learned Res. Involv. Engagem. Pub Date : 2023-10-28 Carmel McGrath, Mari-Rose Kennedy, Andy Gibson, Samira Musse, Zahra Kosar, Shoba Dawson
Certain communities are underserved by research, resulting in lower inclusion rates, under researched health issues and a lack of attention to how different communities respond to health interventions. Minoritised ethnic groups are often underserved by research and services. They experience health inequalities and face significant barriers to accessing health services. It is recognised that new approaches
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Incorporation of patient and public involvement in statistical methodology research: a survey assessing current practices and attitudes of researchers Res. Involv. Engagem. Pub Date : 2023-10-27 Lucy Abell, Francesca Maher, Samina Begum, Sarah Booth, Jonathan Broomfield, Sangyu Lee, Ellesha Smith, Rachael Stannard, Lucy Teece, Elpida Vounzoulaki, Hannah Worboys, Laura J. Gray
Patient and public involvement (PPI) ensures that research is designed and conducted in a manner that is most beneficial to the individuals whom it will impact. It has an undisputed place in applied research and is required by many funding bodies. However, PPI in statistical methodology research is more challenging and work is needed to identify where and how patients and the public can meaningfully
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The INSIGHT project: reflections on the co-production of a quality recognition programme to showcase excellence in public involvement in health and care research Res. Involv. Engagem. Pub Date : 2023-10-25 Steven Blackburn, Rachele Hine, Samantha Fairbanks, Phillip Parkes, Darren Murinas, Andrew Meakin, Robert Taylor, Linda Parton, Marilyn Jones, Jessica Tunmore, Jennifer Lench, Nicola Evans, Katharine Lewney, Lucy O’Mara, Anthony A. Fryer
The quality of Patient and Public Involvement (PPI) in healthcare research varies considerably and is frequently tokenistic. We aimed to co-produce the Insight | Public Involvement Quality Recognition and Awards programme, based on the UK Standards for Public Involvement (UKSPI) alongside an incremental scale designed by Expert Citizens (a lived experience-led community group), to incentivise and celebrate
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The value of co-creating a clinical outcome assessment strategy for clinical trial research: process and lessons learnt Res. Involv. Engagem. Pub Date : 2023-10-24 Thomas Morel, Karlin Schroeder, Sophie Cleanthous, John Andrejack, Geraldine Blavat, William Brooks, Lesley Gosden, Carroll Siu, Natasha Ratcliffe, Ashley F. Slagle
In support of UCB pharmaceutical research programs, the aim of this research was to implement a novel process for patient involvement in a multidisciplinary research group to co-create a clinical outcome assessment strategy to accurately reflect the experience of people living with early-stage Parkinson’s. Patient experts were an integral part of the decision-making process for patient-reported outcome
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Demonstrating the learning and impact of embedding participant involvement in a pandemic research study: the experience of the SARS-CoV-2 immunity & reinfection evaluation (SIREN) study UK, 2020–2023 Res. Involv. Engagem. Pub Date : 2023-10-18 Anna Howells, Erika Neves Aquino, Deepika Bose, Martin Gerard Kelly, Barbara Molony-Oates, Asmah Hassan Syed, Kim Tolley, Claire Neill, Susan Hopkins, Victoria Hall, Jasmin Islam
Participant involvement in research studies is not a new concept, yet barriers to implementation remain and application varies. This is particularly true for pandemic response research studies, where timeframes are condensed, pressure is high and the value and inclusion of participant involvement can be overlooked. The SIREN Participant Involvement Panel (PIP) provides a case study for participant
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Developing a national strategy of consumer and community involvement (CCI) for women’s health research Res. Involv. Engagem. Pub Date : 2023-10-18 Rebecca L. Madill, Leslie D. Arnott, Lesley Pascuzzi, Katie Allen, Angela L. Todd, Janette Perz, Helen Bolger-Harris, Gita D. Mishra, Jacqueline A. Boyle
To develop a consumer and community involvement (CCI) strategy for the Women’s Health Research, Translation and Impact Network (WHRTN), an initiative of the Australian Health Research Alliance (AHRA). A national network, comprising representatives from 14 nationally-accredited research translation centres that aims to embed CCI at a systems level, to improve equity and health outcomes across women’s
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Assessing the impact of university students’ involvement in the first year of Nurture-U: a national student wellbeing research project Res. Involv. Engagem. Pub Date : 2023-10-17 Jemima Dooley, Amina Ghezal, Thomas Gilpin, Husna Hassan Basri, Katy Humberstone, Amber Lahdelma, Pranati Misurya, Ellen Marshall, Ed Watkins
Students experience lower levels of wellbeing than the general, age-matched population. A whole-university approach to mental health is encouraged, which must work for individuals from all backgrounds and experiences. Student input is vital in researching and designing these solutions. Nurture-U is a national, large-scale research project exploring better ways to support student wellbeing, with a Student
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Encouraging diversity in family engagement in research: Reflections on the development of knowledge translation tools Res. Involv. Engagem. Pub Date : 2023-10-13 Janet W. T. Mah, Katie Nickerson
Family engagement in research is crucial to generating relevant, impactful, and meaningful priorities and outcomes. Although there has been increased awareness and value for patient-oriented research, most patient partners in North America are from Western, educated, industrialized, rich and democratic societies. Encouraging underserviced and marginalized populations to join the partnerships is important
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Hidden gems: a pilot project to solicit and reward patients’ and caregivers’ ideas for research Res. Involv. Engagem. Pub Date : 2023-10-13 Freya Moxham, Christine Cutaran, Jakub Sadocha, Korey Capozza
Patients and caregivers investigate a wide range of approaches to address the signs and symptoms of their condition. Such investigation could lead to new treatment insights or avenues for research. However, currently there are few channels through which patients and families can share the results of their personal experiences; they need a platform to share their insights with the research community