Research Involvement and Engagement Pub Date : 2019-09-11 , DOI: 10.1186/s40900-019-0158-y Louise Locock 1 , Susan Kirkpatrick 2 , Lucy Brading 3 , Gordon Sturmey 4 , Jocelyn Cornwell 5 , Neil Churchill 6 , Glenn Robert 7
Thank you for commenting on our paper [1]. Firstly, we agree that it is possible for people to engage with ‘raw data’; the ‘gold standard’ approach referred to by Jennings et al. [2] involves people engaging deeply with transcripts, to “achieve meaning at a deep, semantic level, and undertake extensive co-revision of themes, codes and frameworks as findings emerge. In essence, if the academic researchers are doing it, so are the PPI co-researchers.”
It is worth noting that in our case we were conducting a secondary analysis of existing data collected some time ago. While we had PPI partners involved throughout our secondary analysis project, by definition that group of people could not have been involved in the data collection. Thus we were looking for ways to involve people in exploring this previously collected data from a new angle. Nonetheless, as we noted in our paper, some of the people who got involved with our project were really enthusiastic about engaging directly with transcripts. It is good to hear of your positive experience of reading and engaging with selected transcripts, and we agree that this may be easier when a group of people have been involved in primary data collection, a point also made by Jennings.
However, we would also argue that it is important not to let the best be the enemy of the good. Sometimes there may be more pragmatic ways to approach user involvement in analysis which make good use of people’s time and insights, and potentially bring a wider range of perspectives to bear. If we involve only those people willing to read full transcripts we could miss important insights from a wider group of people who might like to contribute in a different way. A full qualitative research dataset – say 40 interviews of an hour and a half each – can easily run to 1500 pages of text. Even reading 1500 pages, let alone coding the content and relating it to previous literature and theory, is a substantial undertaking (and one which, incidentally, is often under-estimated by those unfamiliar with qualitative research). The idea that an analytic conversation might be a helpful alternative approach was developed with and by our PPI partners, including two PPI co-authors, and is not simply a researcher view. Offering individuals a choice of ways to inform analysis can be helpful for them and enhance diversity.
In your group, using Garfield’s approach [3], you each read a few selected transcripts, and then brought your insights to a discussion of themes with the researcher. This sounds very much like an analytic conversation, but with a starting point in individual readings rather than a group discussion of likely anticipated themes. This is of course another good way to stimulate analytic conversation, rooted in raw data but not expecting people to analyse a whole dataset. In fact one of us is doing something similar in a current project where there was PPI involvement from the beginning in shaping the proposal and the interview guide, and now towards the end we are sharing selected transcripts and inviting PPI reflections on the emerging themes which will inform the researcher’s coding and analysis.
We would note that we did not ask people to share with us their experiences as such; we asked them to propose touchpoints drawing on or informed by their own experience. These touchpoints were intended to be generic likely issues for us to look out for (such as ‘noise’ or ‘support after discharge’), and where service improvement efforts could be focussed. We think this bringing of personal experiential insights (in this case to inform analysis and the identification of improvement priorities) is part of the point of PPI, but that is very different from treating it as data.
There are different ways to approach user involvement in qualitative data analysis, depending on the nature of the topic, the type of project (e.g. secondary versus primary analysis), how applied or theoretical the study is, and the skills, preferences and interests of the people involved. As Jennings et al. note, limited time and financial/human resources are another factor, and in “most funded studies….compromises between quality and pragmatism are required”. We would suggest there is no one “right” way, but a plurality of good ways, and we all learn by openly sharing our experiences, our successes and our challenges.
Not applicable.
- 1.
Williams M, Etkind M, Husson F, Ogunleye D, Norton J. Comments on: Involving service users in the qualitative analysis of patient narratives to support healthcare policy improvement. Res Involv Engagem. 2019;5 https://doi.org/10.1186/s40900-019-0157-z.
- 2.
Jennings H, Slade M, Bates P, Munday E, Toney R. Best practice framework for patient and public involvement (PPI) in collaborative data analysis of qualitative mental health research: methodology development and refinement. BMC Psychiatry. 2018;18:213. https://doi.org/10.1186/s12888-018-1794-8.
- 3.
Garfield S, Jheeta S, Husson F, Jacklin A, Bischler A, Norton C, Franklin BD. Lay involvement in the analysis of qualitative data in health Serv res: a descriptive study. Res Involv Engagem. 2016;2:29. https://doi.org/10.1186/s40900-016-0041-z.
Thanks to all the people who attended our analysis workshops, and to the original interviewees whose interviews we worked with. Thanks also to the DIPEx Charity, which hosts the DIPEx website, for creating the series of trigger films. Dr. Sian Rees was a co-applicant on the original grant but has since retired. At the time of the work, LL was supported by NIHR Oxford Biomedical Research Centre.
Funding
Economic and Social Research Council (ES/L01338X/1).
Affiliations
- Health Services Research Unit, University of Aberdeen, Health Sciences Building, Foresterhill, Aberdeen, AB25 2ZD, UK
- Louise Locock
- Nuffield Department of Primary Care Health Sciences, University of Oxford, Woodstock Rd, Oxford, OX2 6GG, UK
- Susan Kirkpatrick
- Institute of Psychology Health and Society/North West Hub for Trials Methodology Research, University of Liverpool, Liverpool, L69 3GL, UK
- Lucy Brading
- Aberdeen, UK
- Gordon Sturmey
- Point of Care Foundation, 99 Gray’s Inn Rd, London, WC1X 8TY, UK
- Jocelyn Cornwell
- Participation and Equalities, NHS England, Quarry House, Quarry Hill, Leeds, LS2 7UE, UK
- Neil Churchill
- Florence Nightingale Faculty of Nursing, Midwifery and Palliative Care, King’s College London, James Clerk Maxwell Building, 57 Waterloo Rd, London, SE1 8WA, UK
- Glenn Robert
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Contributions
LL, GR, JC, MG, GS and NC designed the original study and reflected regularly on the work with the lead researcher, SK. SK, LL and GS attended both involvement workshops; LB attended one of the workshops and subsequently joined the team as a co-author. GR also attended the first workshop. Drafting of the paper was led by SK and LL with LB, with all other authors contributing comments and reflections, and approving the final version.
Authors’ information
Neil Churchill is Director for Experience, Participation and Equalities at NHS England. Jocelyn Cornwell is Chief Executive of the Point of Care Foundation, which provides training in patient-centred quality improvement.
Corresponding author
Correspondence to Louise Locock.
Ethics approval and consent to participate
The original interviews included in the secondary analysis were given approval by Berkshire Research Ethics Committee (09/H0505/66). Patients consented to be interviewed, and for their interviews to be a) disseminated online on Healthtalk and b) to be used additionally for secondary analysis, teaching and service improvement. This paper reports a patient and public involvement project, exploring involvement in qualitative data analysis and commenting on data already collected in the above interviews. University of Oxford institutional ethics guidance states that people who are “giving their views on research….do not count as “human participants” in the sense intended by CUREC’s [Central University Research Ethics Committee] policy. They are not giving you information about themselves, and the opinions they offer are not themselves the subject of research. You need not get ethical approval of your research if your contact with people is confined to this sort of interaction”.
https://researchsupport.admin.ox.ac.uk/governance/ethics/faqs-glossary/faqs#collapse410611 (FAQ A6).
People who took part in the workshops did so as patient and public involvement partners, and were paid an honorarium for their time. They were given written information about the purpose of the workshops as well as verbal explanation and training.
Consent for publication
No personal data included.
Competing interests
LL and GR have both taught on quality improvement training programmes run by JC and the Point of Care Foundation. GR is one of the originators of EBCD. Other authors declare that they have no competing interests.
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Cite this article
Locock, L., Kirkpatrick, S., Brading, L. et al. Response to “comments on: involving service users in the qualitative analysis of patient narratives to support healthcare quality improvement. Res Involv Engagem 5, 26 (2019) doi:10.1186/s40900-019-0158-y
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中文翻译：
回应“评论：让服务使用者参与患者叙述的定性分析，以支持医疗保健质量的改进。
感谢您对我们的论文 [ 1 ] 发表评论。首先，我们同意人们有可能接触“原始数据”；Jennings 等人提到的“黄金标准”方法。[ 2 ] 涉及人们深入参与记录，以“在深层语义层面实现意义，并在发现结果时对主题、代码和框架进行广泛的共同修订。从本质上讲，如果学术研究人员在这样做，那么 PPI 的联合研究人员也在这样做。”
值得注意的是，在我们的案例中，我们正在对前一段时间收集的现有数据进行二次分析。虽然我们有 PPI 合作伙伴参与我们的二次分析项目，但根据定义，这群人不可能参与数据收集。因此，我们正在寻找方法让人们从新的角度探索之前收集的数据。尽管如此，正如我们在论文中指出的，一些参与我们项目的人非常热衷于直接参与成绩单。很高兴听到您阅读和参与选定文本的积极经历，我们同意，当一群人参与主要数据收集时，这可能会更容易，詹宁斯也提出了这一点。
然而，我们也认为重要的是不要让最好的成为优秀的敌人。有时可能有更务实的方法来让用户参与分析，充分利用人们的时间和见解，并可能带来更广泛的观点。如果我们只让那些愿意阅读完整记录的人参与，我们可能会错过更多可能愿意以不同方式做出贡献的人的重要见解。完整的定性研究数据集（例如 40 次采访，每次采访一个半小时）可以轻松达到 1500 页文本。即使阅读 1500 页，更不用说对内容进行编码并将其与以前的文献和理论联系起来，也是一项艰巨的任务（顺便说一句，这项任务经常被那些不熟悉定性研究的人低估）。分析对话可能是一种有用的替代方法的想法是由我们的 PPI 合作伙伴（包括两位 PPI 合著者）共同开发的，而不仅仅是研究人员的观点。为个人提供多种分析信息的选择方式对他们有帮助并增强多样性。
在你们的小组中，使用加菲猫的方法[ 3 ]，你们每个人阅读一些选定的文字记录，然后将你们的见解带入与研究人员的主题讨论中。这听起来很像一次分析性对话，但以个人阅读为起点，而不是对可能预期的主题进行小组讨论。这当然是刺激分析对话的另一种好方法，它植根于原始数据，但不期望人们分析整个数据集。事实上，我们中的一个人正在当前的一个项目中做类似的事情，PPI 从一开始就参与制定提案和采访指南，现在，在接近尾声时，我们正在分享选定的记录，并邀请 PPI 对新兴主题进行反思，这将为研究人员的编码和分析提供信息。
我们要指出的是，我们并没有要求人们与我们分享他们的经历；我们只是要求人们与我们分享他们的经历。我们要求他们根据自己的经验提出接触点。这些接触点旨在成为我们需要注意的一般性可能问题（例如“噪音”或“出院后支持”），以及可以重点关注服务改进工作的地方。我们认为这种带来个人经验见解（在本例中为分析和确定改进优先级提供信息）是 PPI 的一部分，但这与将其视为数据有很大不同。
有不同的方法让用户参与定性数据分析，具体取决于主题的性质、项目的类型（例如二次分析与初步分析）、研究的应用或理论程度以及参与者的技能、偏好和兴趣。相关人员。正如詹宁斯等人。请注意，有限的时间和财务/人力资源是另一个因素，并且在“大多数资助的研究中……需要在质量和实用主义之间做出妥协”。我们建议，没有一种“正确”的方法，而是有多种好的方法，我们都通过公开分享我们的经验、成功和挑战来学习。
不适用。
- 1.
Williams M、Etkind M、Husson F、Ogunleye D、Norton J. 评论：让服务用户参与患者叙述的定性分析，以支持医疗保健政策的改进。资源涉及参与。2019；5 https://doi.org/10.1186/s40900-019-0157-z。
- 2.
Jennings H、Slade M、Bates P、Munday E、Toney R。定性心理健康研究协作数据分析中患者和公众参与 (PPI) 的最佳实践框架：方法开发和完善。BMC 精神病学。2018；18：213。https://doi.org/10.1186/s12888-018-1794-8。
- 3.
加菲猫 S、杰塔 S、哈森 F、杰克林 A、比施勒 A、诺顿 C、富兰克林 BD。外行参与健康服务资源中的定性数据分析：一项描述性研究。资源涉及参与。2016；2:29。https://doi.org/10.1186/s40900-016-0041-z。
感谢所有参加我们的分析研讨会的人，以及与我们一起进行采访的原始受访者。还要感谢负责 DIPEx 网站的 DIPEx 慈善机构制作了该系列触发影片。Sian Rees 博士是最初拨款的共同申请人，但现已退休。在工作期间，LL 得到了 NIHR 牛津生物医学研究中心的支持。
资金
经济和社会研究理事会（ES/L01338X/1）。
隶属关系
- 阿伯丁大学健康服务研究部，健康科学大楼，Foresterhill，阿伯丁，AB25 2ZD，英国
- 路易丝·洛克
- 牛津大学纳菲尔德初级保健健康科学系，Woodstock Rd, Oxford, OX2 6GG, UK
- 苏珊·柯克帕特里克
- 心理健康与社会研究所/西北试验方法研究中心，利物浦大学，利物浦，L69 3GL，英国
- 露西·布雷丁
- 英国阿伯丁
- 戈登·斯特梅
- 护理点基金会，99 Gray's Inn Rd，伦敦，WC1X 8TY，英国
- 乔斯林·康威尔
- 参与与平等，NHS England, Quarry House, Quarry Hill, Leeds, LS2 7UE, UK
- 尼尔·丘吉尔
- Florence Nightingale 伦敦国王学院护理、助产和姑息治疗学院 James Clerk Maxwell Building, 57 Waterloo Rd, London, SE1 8WA, UK
- 格伦·罗伯特
- 在以下位置搜索路易丝·洛克：
- 在以下位置搜索苏珊·柯克帕特里克：
- 在以下位置搜索露西·布雷丁：
- 在以下位置搜索戈登·斯特梅：
- 在以下位置搜索乔斯林·康威尔：
- 在以下位置搜索尼尔·丘吉尔：
- 在以下位置搜索格伦·罗伯特：
贡献
LL、GR、JC、MG、GS 和 NC 设计了原始研究，并定期反思与首席研究员 SK 的工作。SK、LL 和 GS 参加了两次参与研讨会；LB 参加了其中一个研讨会，随后作为合著者加入了该团队。GR也参加了第一场研讨会。该论文的起草工作由 SK 和 LL 以及 LB 领导，所有其他作者都提出了评论和思考，并批准了最终版本。
作者信息
尼尔·丘吉尔 (Neil Churchill) 是英国国民医疗服务体系 (NHS England) 体验、参与和平等部门的主管。乔斯林·康威尔 (Jocelyn Cornwell) 是护理点基金会 (Point of Care Foundation) 的首席执行官，该基金会提供以患者为中心的质量改进培训。
通讯作者
路易丝·洛科克的通讯。
道德批准并同意参与
二次分析中包含的原始访谈得到了伯克希尔研究伦理委员会的批准 (09/H0505/66)。患者同意接受采访，并同意他们的采访 a) 在 Healthtalk 上在线传播，b) 另外用于二次分析、教学和服务改进。本文报告了一个患者和公众参与项目，探索参与定性数据分析并对上述访谈中已收集的数据进行评论。牛津大学机构道德指南指出，“对研究发表意见的人……不属于 CUREC [中央大学研究道德委员会]政策所指的‘人类参与者’。” 他们不会向您提供有关他们自己的信息，他们提供的观点本身也不是研究的主题。如果你与人的接触仅限于这种互动，那么你的研究就不需要获得道德上的认可”。
https://researchsupport.admin.ox.ac.uk/governance/ethics/faqs-glossary/faqs#collapse410611（常见问题解答 A6）。
参加研讨会的人们是作为耐心和公众参与的合作伙伴，并获得了酬金。他们获得了有关研讨会目的的书面信息以及口头解释和培训。
同意发表
不包含个人数据。
利益争夺
LL 和 GR 都曾教授 JC 和护理点基金会运营的质量改进培训项目。GR是EBCD的鼻祖之一。其他作者声明他们没有竞争利益。
出版商备注
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洛科克，L.，柯克帕特里克，S.，布雷丁，L.等人。回应“评论：让服务使用者参与患者叙述的定性分析，以支持医疗保健质量的改进。Res Involv Engagem 5, 26 (2019) doi:10.1186/s40900-019-0158-y
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