Reflections and experiences of a co-researcher involved in a renal research study

Marks, Sue Anne; Mathie, Elspeth; Smiddy, Jane; Jones, Julia; Silva-Gane, Maria Da

doi:10.1186/s40900-018-0120-4

Cited by 15 publications

(48 citation statements)

References 33 publications

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“…After duplicates were removed (n = 1521), 6684 records were screened, and 979 records were selected for full‐text review. A total of 78 academic/peer‐reviewed articles 10 , 27 , 28 , 29 , 30 , 31 , 32 , 33 , 34 , 35 , 36 , 37 , 38 , 39 , 40 , 41 , 42 , 43 , 44 , 45 , 46 , 47 , 48 , 49 , 50 , 51 , 52 , 53 , 54 , 55 , 56 , 57 , 58 , 59 , 60 , 61 , 62 , 63 , 64 , 65 , 66 , 67 , 68 , 69 , 70 , 71 , 72 , 73 , 74 , 75 , 76 , 77 , 78 , 79 , 80 ,…”

Section: Resultsmentioning

confidence: 99%

Patients as partners in health research: A scoping review

McCarron

Clement

Rasiah

et al. 2021

Health Expectations

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Background The role of patient involvement in health research has evolved over the past decade. Despite efforts to engage patients as partners, the role is not well understood. We undertook this review to understand the engagement practices of patients who assume roles as partners in health research. Methods Using a recognized methodological approach, two academic databases (MEDLINE and EMBASE) and grey literature sources were searched. Findings were organized into one of the three higher levels of engagement, described by the Patient and Researcher Engagement framework developed by Manafo. We examined and quantified the supportive strategies used during involvement, used thematic analysis as described by Braun and Clarke and themed the purpose of engagement, and categorized the reported outcomes according to the CIHR Engagement Framework. Results Out of 6621 records, 119 sources were included in the review. Thematic analysis of the purpose of engagement revealed five themes: documenting and advancing PPI, relevance of research, co‐building, capacity building and impact on research. Improved research design was the most common reported outcome and the most common role for patient partners was as members of the research team, and the most commonly used strategy to support involvement was by meetings. Conclusion The evidence collected during this review advanced our understanding of the engagement of patients as research partners. As patient involvement becomes more mainstream, this knowledge will aid researchers and policy‐makers in the development of approaches and tools to support engagement. Patient/User Involvement Patients led and conducted the grey literature search, including the synthesis and interpretation of the findings.

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Section: Resultsmentioning

confidence: 99%

Patients as partners in health research: A scoping review

McCarron

Clement

Rasiah

et al. 2021

Health Expectations

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“…This, of course, may be because the co-author did not wish to divulge their personal experiences in a publication; but it was still considered a ‘missed opportunity’ by our co-researchers, that could have strengthened the account of the research from a PPI perspective. Particularly if the co-author had a co-researcher role in the research, which would have been a valuable experience to share with readers regarding the wearing of different ‘hats’ in research [ 52 ].…”

Section: Discussionmentioning

confidence: 99%

Reporting on patient and public involvement (PPI) in research publications: using the GRIPP2 checklists with lay co-researchers

et al. 2021

Self Cite

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Background Patient and public involvement (PPI) in health and social care research is considered important internationally, with increasing evidence that PPI improves the quality, relevance and outcomes of research. There has been a growth in research publications that describe PPI in the research process, but the frequency and detail of PPI reporting varies considerably. This paper reports on a collaborative study that aimed to describe the extent of PPI in publications from research funded by the Collaboration for Leadership in Applied Health Research and Care (CLAHRC) in the East of England (EoE), part of the National Institute of Health Research (NIHR) in England (2014–2019). Methods A descriptive study of all research publications (1st January 2014 to 31st October 2017) funded by the NIHR CLAHRC EoE. Members of the Public Involvement in Research group (PIRg), at the University of Hertfordshire, were actively involved, with four PIRg co-researchers. We used an internationally recognised reporting checklist for PPI called the GRIPP2 (Guidance for Reporting Involvement of Patients and the Public, Version 2) to guide the reviewing process. Results Out of 148 research papers identified, 16 (14%) reported some aspect of PPI activity and were included for review. Ten of the publications (63%) acknowledged the contributions of PPI individuals and/or groups and five had PPI co-authors. There was considerable variation in the PPI reported in the publications, with some ‘missed opportunities’ to provide detail of PPI undertaken. The perspectives of the co-researchers shaped the reporting of the results from this study. The co-researchers found the GRIPP2-SF (short form) to be useful, but the GRIPP2-LF (long form) was considered over complicated and not user-friendly. Conclusions This is one of the first studies to involve lay co-researchers in the review of PPI reporting using the GRIPP2 reporting checklists (GRIPP2-SF and GRIPP2-LF). We make recommendations for a revised version of the GRIPP2-SF, with clearer instructions and three additional sections to record whether PPI is reported in the abstract or key words, in the acknowledgements section, and whether there are PPI co-authors. We also recommend the provision of training and support for patient and public peer reviewers.

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“…Marks et al (2018) reported involving a member of the public in a research project about kidney disease, even though that person had no experience of the condition as either a patient or carer [ 15 ]. This involvement was reported to have many impacts including making the information sheets for potential participants easier to read and changing practical aspects of the research design.…”

Section: Does It Matter If ‘Members Of the Public’ Are Involved Instead Of ‘Patients/carers’?mentioning

confidence: 99%

Who should I involve in my research and why? Patients, carers or the public?

Staley

Elliott

Stewart³

et al. 2021

Res Involv Engagem

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Patient and public involvement in research helps to make it more relevant and useful to the end-users. Involvement influences the design, delivery and dissemination of research, ultimately leading to better services, treatments and care. Researchers are therefore keen to involve patients, carers and public in their work, but are sometimes uncertain about who to involve. Some confusion may arise from the terms used. The UK’s catch-all term ‘patient and public involvement’ suggests this is a single activity, that perhaps both ‘patient’ and ‘public’ input are needed, or that either will do. The terms ‘patient’, ‘carer’ and ‘public’ have been defined, but are not used consistently. In fact there are many different contexts for involvement and many different kinds of decisions made, which then determine whose input will be most valuable.Clarity about the ‘why’ can help answer the ‘who’ question. However, not all researchers are clear about the purpose of involvement. While it is often understood to have a moral purpose, or to improve research quality, this doesn’t always identify who needs to be involved. When learning is understood to be the purpose of involvement, then the most appropriate people to involve are those with relevant experiential knowledge. In research projects, these are people with lived experience of the topic being investigated. This could be patients, carers, members of the public or health professionals.In this article we discuss how involving people who do not have the relevant experiential ‘lived’ knowledge may contribute to ineffective or tokenistic involvement. These people are as likely as researchers to make assumptions, risking missing key insights or resulting in outcomes that are off-putting or even harmful to research participants.We conclude that greater attention needs to be given to the question of who to involve. Raising awareness of the significance of experiential knowledge and the contextual factors that determine whose input will be most useful will help everyone to understand their roles and improve the quality of involvement. It will help to maximise the opportunities for learning, increasing the likelihood of impact, and helping to achieve the ultimate goal of improved health and services.

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Reflections and experiences of a co-researcher involved in a renal research study

Cited by 15 publications

References 33 publications

Patients as partners in health research: A scoping review

Patients as partners in health research: A scoping review

Reporting on patient and public involvement (PPI) in research publications: using the GRIPP2 checklists with lay co-researchers

Who should I involve in my research and why? Patients, carers or the public?

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