A review of patient and public involvement in realist reviews: further clarity needed in reporting of PPI

A review of patient and public involvement in realist reviews: further clarity needed in reporting of PPI

The National Institute for Health Research (NIHR, 2019) defines patient and public PI as research being carried out ‘with’ or ‘by’ members of the public, rather than ‘to’, ‘about’ or ‘for’ them. Increasingly, patient and public involvement in health services and health research have been advocated by governments, non-governmental organizations and funders due to the benefits it can bring to patients and the public. This has caused many health researchers to increase PPI within their research.

Systematic reviews, usually conducted by researchers, are a common method to summarise evidence in one specific subject by collecting information from different studies. Realist reviews often involve non-researchers and synthesize evidence that considers the complexities of interventions or innovations, and produce causal explanations about what works, in which contexts, and for who (Wong, 2018).

Despite PPI being advocated for several decades, and implemented in research in the last few years, little evidence exists on how and why PPI impacts research. Abrams and collaborators (2020) conducted a review of reviews where PPI and contributor involvement are documented within published healthcare evidence. Specifically, they aimed to: (1) describe the ways in which contributors have been involved in realist reviews, with a particular focus on PPI and (2) document how involvement has been reported.

Despite the increase of Patient Public Involvement (PPI) in health research, little is known on how and why PPI impacts research

Despite more patient and public involvement (PPI) in health research, little is known about how and why PPI impacts research.

Methods

The authors conducted a systematic review of realist reviews published from 2014 in health research.

Search strategy

4 electronic databases (CINAHL, Embase, Medline, and PsycINFO) were searched using keywords in order to identify studies published in English from 2014 to 2019.

Study selection

The first author screened 448 titles and abstracts. In order for articles to be included in the full-text stage they had to be:

  • Peer-reviewed articles,
  • Full and completed realist reviews (ie, not protocols, not systematic reviews),
  • Undertaken in any healthcare setting, in any country.

Articles passed the full-text stage when they included any keywords associated with contributor involvement (e.g. stakeholder(s), PPI/contribution, expert(s) panel/group, and advisory panel/group). All articles included in the final results were double screened by a second author.

Data analysis

Framework analysis was used to analyze the data which consists of a 6-stage process of familiarisation, coding, developing an analytical framework, application of the analytical framework, charting the data in a framework matrix, and interpreting the data (Spencer et al., 2014). The authors provided their framework analysis matrix in the supplementary materials.

Results

Seventy-one papers were included in the review, with the majority coming from Europe (n=50), followed by North America (n=16) and five from Australia. Over half of the papers (n=36) were published in the UK. The authors presented their results in the following 3 sections: nomenclature, nature of involvement, reporting impact.

Nomenclature

Different terms were identified and used to refer to contributor involvement, including:

  • Experts/expert/reference panels/groups (including academics, content experts and service user representatives) (n=25)
  • Stakeholders (typically comprising commissioners, policymakers, service providers, and key informants) (n=32)
  • Advisory groups (typically comprising clinicians, academics, and service providers) (n=14).

Patient involvement was acknowledged in 4 papers, although not directly using the term. Public involvement was also acknowledged in several papers, with 25 referring to them as experts and seven as members of the public.

Nature of involvement

  • Stakeholders (e.g. policymakers and service providers) were involved during the initial stages of reviews such as consultations, interviews to inform program theories, initial workshops
  • Advisory panel groups or experts were involved in developing research questions, providing literature, and data extraction and analysis
  • Patient involvement included experiential knowledge, expertise, advice and discussion of findings with varying numbers of hours of involvement.

Reporting impact

  • Describing the impact of involvement was generally short but described in detail, although some studies did not report on the impact of the involvement.
  • The ways in which contributors impacted research:
    • Shaped emergent findings
    • Refined final program theories
    • Enhanced the conceptual clarity of a review’s mechanisms
  • Different studies reported various types of impact, depending on whether they saw these as ‘worthy of being reported, which resulted in increased variation of reporting of reviews.

Nomenclature, nature of involvement and reporting impact were the three ways in which authors summarised the involvement of contributors in health reviews.

Nomenclature, nature of involvement and reporting impact were the three ways in which authors summarised the involvement of contributors in health reviews.

Conclusions

With the increasing push of having contributors (patients and the public) involved in health research, this review of reviews found there are different ways and stages in which contributors are involved in reviews. However, the involvement of contributors in health realist reviews was not clearly reported. As a researcher with previous experience reporting contributors’ involvement in research (Troya et al., 2019), I have identified that the structures for adequate reporting are not always present. For example, few journals include sections on patient and public involvement in their articles, which often results in the researcher having to include a separate statement and then having to justify the need and relevance of including such information. With limited word counts in journals, it is often hard to fully detail contributors’ involvement. Therefore, structural challenges in reporting contributors’ involvement prevail.

Furthermore, the study authors highlight that contributors often are incorporated into already existing groups and structures of stakeholder or advisory panels, which hinders clarity in reporting the exact contribution made by the patient and public contributors. Contributors are involved at different stages of realist reviews, which results in varying impacts. Abrams and colleagues (2020) highlight the importance of inviting contributors at key and early stages of realist reviews, as this respects both expertise and boundaries of contributors. However, there are no ethical guidelines on how best to approach this involvement as there is no requirement for ethical approval for contributors’ involvement in reviews.

Involvement of contributors to health realist reviews are not clearly reported despite a range of contributors being involved.

The involvement of contributors to health realist reviews are not clearly reported despite a range of contributors being involved.

Strengths and limitations

Strengths

  • The first review that examines the role of contributors in health realist reviews
  • A systematic search in four large databases with full-text screening stage including two authors
  • Authors synthesized information from their review in a clear and concise way using a well-known analysis method: a framework analysis

Limitations

  • Quality appraisal of reviews included in the study was not conducted
  • Title and abstract screening was conducted by only one author
  • No contributors were involved in this review, due to the need of training individuals with needed skills
  • Authors included only articles written in English, limiting representation from other countries/settings.

This is the first review to examine the role of contributors in health realist reviews.

Implications for practice

Abrams and collaborators (2020) incorporated findings from their review, alongside two patient representatives, in order to create prompts for researchers and contributors involved in realist reviews.

Briefly, in their blog, Abrams provides researchers and contributors prompts so that researchers and contributors can reflect on their involvement or lack of involvement in realist reviews.

Prompts for researchers

  • Reason for choosing (or not) to include contributors to realist reviews
  • Will contributors be involved at all stages, if not, why not?
  • Expectations around rigor and relevance of the contribution
  • Avenues of communication with contributors
  • How will you incorporate contributors’ suggestions?
  • How will feedback be provided?

Prompts for contributors

  • Are you able to commit to this process (e.g. time)?
  • Expectations around how best to receive updates and information
  • Resources needed for you to support the realist review
  • Avenues of communication
  • Financial and other benefits from your involvement
  • Support needed for your involvement: communication and emotional

When including contributors to health research reviews, it is important to clearly acknowledge and report their contribution.

When including contributors (patients and the public) in health research reviews, it is important to clearly acknowledge and report their contributions.

Statement of interests

None.

Links

Primary paper

Abrams, R., Park, S., Wong, G., Rastogi, J., Boylan, A. M., Tierney, S., … & Roberts, N. (2020). Lost in reviews: Looking for the involvement of stakeholders, patients, public and other non‐researcher contributors in realist reviews. Research Synthesis Methods.

Other references

National Institute for Health Research. Patient and Public Involvement resources. NIHR website, last accessed 12 Dec 2020.

Spencer L, Ritchie J, Ormston R, et al., eds. (2014). Qualitative Research Practice: A Guide for Social Science Students and Researchers. London, UK: Sage.

Troya, M. I., Chew‐Graham, C. A., Babatunde, O., Bartlam, B., Higginbottom, A., & Dikomitis, L. (2019). Patient and Public Involvement and Engagement in a doctoral research project exploring self‐harm in older adultsHealth Expectations22(4), 617-631. 7

Wong G (2018). Data gathering in realist reviews: looking for needles in haystacks. In: Emmel N, Greenhalgh J, Manzano A, Monaghan M, Dalkin S, eds. Doing Realist Research. UK: Sage:131-146.

Photo credits

Isabela is a Post-Doctoral Researcher on the Irish Health Research Board funded programme ‘Individual and Area Level Determinants of Self-Harm and Suicide in Ireland: Enhancing Prediction, Risk Assessment and Management of Self-Harm by Health Services’. She trained and qualified as a Clinical Psychologist (2015) at University San Francisco de Quito, Ecuador, and completed an MSc in Global Mental Health (2016) at King’s College London and London School of Hygiene and Tropical Medicine. Her PhD thesis, titled ‘Understanding self-harm behaviour in older adults was awarded PhD prize of the year (2020) by the UK’s Society for Academic Primary Care. In her current role, Isabela manages and co-leads the development and implementation of an advanced skills training for health professionals supporting people who self-harm: Self-harm Assessment and Management Programme for General Hospitals (SAMAGH) Training Programme. A Post-Doctoral Researcher at the School of Public Health, UCC and the National Suicide Research Foundation (NSRF), Isabela contributes NSRF’s activities as a World Health Organization Collaborating Centre for Surveillance and Research in Suicide Prevention, which include supporting the development of the first multi-centre surveillance system for self-harm and suicide prevention in 2 countries: Russia and Ecuador.

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