The National Institute for Health Research (NIHR, 2019) defines patient and public involvement (PPI) 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 has been advocated by governments, non-governmental organisations 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 synthesise evidence that consider 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.
The authors conducted a systematic review of realist reviews published from 2014 in health research.
4 electronic databases (CINAHL, Embase, Medline, and Psycinfo) were searched using keywords in order to identify studies published in English from 2014 to 2019.
The first author screened 448 titles and abstracts. In order for articles to be included to 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 key words 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.
Framework analysis was used to analyse 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.
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. Authors presented their results in the following 3 sections: nomenclature, nature of involvement, reporting impact.
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 initial stages of reviews such as consultations, interviews to inform programme 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.
- Describing 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 programme theories
- Enhanced the conceptual clarity of a review’s mechanisms
- Different studies reported in various types of impact, depending on whether they saw these as ‘worthy’ of being reported, which resulted in increased variation of reporting of reviews.
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 were 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 patient and public contributors. Contributors are involved at different stages of realist reviews, which results in varying impact. 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.
Strengths and limitations
- First review that examines the role of contributors in health realist reviews
- Systematic search in four large databases with full text screening stage including two authors
- Authors synthesised information from their review in a clear and concise way using a well-known analysis method: framework analysis
- 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.
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. These can be found in a blog they wrote for the NIHR School for Primary Care Research website.
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 rigour and relevance of 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
Statement of interests
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.
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 adults. Health Expectations, 22(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.