Reporting PPI in research publications is the exception and not the rule

Kevin J Munro is Programme Director of NIHR's Research for Patient Benefit Programme (RfPB), Dr Jennie Hejdenberg is Assistant Director of RfPB. Dominique Capostagno is a Senior Programme Analyst at NIHR. Dr Cat Chatfield is Editor in Chief of the NIHR Journals Library. Jeremy Taylor OBE is NIHR Director for Public Voice.

Here they explore how researchers and funders?could improve reporting of patient and public involvement in research.?

NIHR is at the vanguard of Patient and Public Involvement (PPI), having integrated PPI into research since its inception in 2006. PPI is essentially research carried out ‘with’ or ‘by’ patients and members of the public. In 2024, the NIHR published its first?Strategic Commitments for Public Partnerships to improve how we work with patients, service-users, carers and the public. This is a step change by NIHR to realise its ambition to make public partnerships diverse, inclusive and impactful.

There is good agreement that patients and the public should be involved in the health and care research process. At its best, PPI representatives are active partners in research teams, with delegated power and control.

PPI is a priority for policymakers, funders, researchers and, increasingly, academic journals.

Despite this, we have found that around 95% of publications from NIHR-funded research published between 2018 and 2022 made no mention of PPI in any capacity whatsoever. As far as we are aware, there has been no systematic approach to understand and address the slow and low reporting of PPI.

Here we explore how and why we should improve the situation.

The benefits of PPI

PPI improves relevance of research to end users as well as improving research processes (see, for example, the PPI impact assessment funded by Evans et al). Inclusive PPI can:

• Ground research in lived experience
• Identify research priorities of under-represented communities
• Build relationships with community groups, promoting and fostering participation
• Improve how research is done
• Enable research that might not otherwise be possible
• Enable researchers to acquire skills and knowledge as a result of working with people with “lived experience” of health and care conditions

There is also an ethical motivation to involve those who are the focus of research and who indirectly fund it.

Embedding PPI in the research process

Good quality resources exist to support researchers wishing to include PPI in their research. NIHR has provided strategic support and infrastructure for PPI to be a key element in research. For example, the NIHR Research Support Service?has a framework for involving patients and the public as partners, which includes:

• Identifying and prioritising research priorities
• Designing grant proposals and study protocols
• Membership of study teams and steering committees
• Analysis and interpretation of data
• Dissemination
• Implementation
• Monitoring and evaluation

The embedding of PPI in the research process is strengthened by the expectation on applicants to include details about PPI activities in the standard application form used by all NIHR programmes. The Stage 2 research application includes a section specific to PPI where researchers describe:

• How PPI has shaped the research study
• Ongoing plans and resource requirements if the project is successfully funded

This information is scrutinised by reviewers, assessors, and research committees (latter includes PPI members) and influences funding decisions.

Reporting of PPI in research publications

Checklists already exist for the reporting and critical appraisal of PPI in research publications. An example is the Guideline for Reporting Involvement of Patients and the Public (GRIPPS)?produced using the Enhancing the Quality and Transparency of Health Research (EQUATOR) network approach.

Several journals recommend reporting of PPI although this is not always mandatory. Exceptions include:

• British Medical Journal, which requires authors to provide a short PPI paragraph as a subsection within the methods section of their papers?
• Health Expectations, where articles include a paragraph at the end of the abstract on Patient and Public Contributions.

Reporting PPI?in RfPB?publications

Research for Patient Benefit (RfPB)?is one of 12 NIHR research programmes, but the only one administered regionally. Since commencing in 2007, RfPB has funded more than 1,300 projects, providing direct benefit to patients and the public by saving and improving lives. Applications are open to all health and care professionals, frequently in collaboration with academic colleagues, who wish to embed research into their day-to-day practice. It is particularly attractive to early career researchers and those from under-represented disciplines.

In April 2024 we searched five years (2018-2022) of records in Researchfish, the online self-reporting system used by funders, including NIHR, to collect information on grant outcomes and impact. Although our interest was specific to RfPB, the search included all NIHR funding schemes. Within the body of publications acknowledging RfPB funding, we searched for PPI and related terms including public involvement, patient involvement, service user involvement, public and patient involvement, and expert by experience.

The reporting of PPI was less than 5% in RfPB publications. This means that around 95% of publications made no mention of PPI, or related terms, in any capacity whatsoever. The figure was similar when averaged across all NIHR awards. This demonstrates that:

• Reporting of PPI is the exception and not the rule
• RfPB is not unique in the low reporting of PPI

NIHR awards reporting through the NIHR Journals Library are the exception. The NIHR Journals Library requires PPI to be reported, which means that awards from the NIHR's research programmes which publish in the NIHR Journals Library will have PPI reported.

So what?

Failure to report PPI in NIHR-funded research output can have significant consequences:

• NIHR’s leading role in promoting PPI is hidden from a global audience
• Learning from experience is limited
• Identifying benefit is difficult
• Resources devoted to PPI activities are potentially wasted

Relatively little attention has been devoted to how PPI should be reported in publications resulting from NIHR funding. Because of journal word limits, the main publication is likely to limit PPI to one paragraph. A simple list of where PPI contributed to the research process is a starting point but is somewhat formulaic and risks tokenism.

While evidence accrues on how best to evaluate the effectiveness of PPI in the research process, a starting point is for the research team to reflect on the benefit, or not, of PPI in shaping the study. Many journals now allow online supplementary materials, and these could be used to elaborate on PPI contribution and impact. Detailed reporting of PPI is also possible via NIHR Open Research. The NIHR Journals Library allows up to 750 words for reporting PPI using the GRIPP2 short form, but this is unavailable to many NIHR award holders, including those funded by RfPB.

Researchers from NIHR’s ARC South-West Peninsula reviewed the compulsory PPI statements in BMJ Open, a general medical journal, published during 2020. Of 3000 articles, one in five papers reported actively including PPI. The team found that research done in the UK had the highest levels of PPI inclusion. Of all the major funders who supported papers included in the study, papers that received funding from the NIHR had the highest levels of PPI. This demonstrates that when PPI is a requirement, researchers are willing to comply.

A first step is changing the behaviour of researchers so that reporting of PPI becomes the norm. Health Psychologists are adept at using theoretical frameworks to systematically explore the barriers and facilitators to adherence and then design an appropriate intervention that will change the behaviour. There is an opportunity to apply the same approaches to increase reporting of PPI.

Take-home message

There is good agreement that patients and the public should be involved in the health and care research process; however, there is little evidence that the nature, and benefits, of the involvement are reported in the main research outputs.

Failure to report PPI in published research output is a barrier to informing good practice and effective PPI. The RfPB team does not regard this as a satisfactory situation, and we will be looking for improvements as part of implementing the new NIHR Strategic Commitments for Public Commitments.

The increasing “buy in” from journal editors provides NIHR researchers with a clear line of sight for PPI, from project inception through to dissemination. If guidance notes rom funders made it explicit that reporting PPI should be the norm (allowing for variation in journal requirements) this will also drive up the current low level of?PPI reporting.

About the authors

• Kevin J Munro?is an NIHR Senior Investigator, Ewing Professor of Audiology at NIHR?Manchester Biomedical Research Centre and Programme Director of NIHR's?Research for Patient Benefit Programme (RfPB)
• Dr Jennie Hejdenberg is Assistant Director of RfPB
• Dominique Capostagno is a Senior Programme Analyst at NIHR
• Dr Cat Chatfield is Editor in Chief of the NIHR Journals Library
• Jeremy Taylor OBE?is NIHR Director for Public Voice

For more NIHR updates, follow NIHR (National Institute for Health and Care Research) or sign up to our newsletters.

This blog was originally published on the NIHR website on 15 August 2024.