Supporting research that is truly valid and meaningful for the public

Sarah Redsell, Lynn Laidlaw, Judit Varkonyi-Sepp and Sarah Hotham on Public and Patient Involvement and Engagement (PPIE) in Covid-19 research. Should we be aiming for perfection, or pragmatism?

The Covid-19 pandemic has stimulated countless applied research projects from academics in all disciplines, including psychologists. However, not all research being conducted is high quality and some of it does not appear to include outcomes of value to patients or the public. Such is the concern that the Cochrane Group are developing a Core Outcome Set (COS) which involves consulting with people with suspected or confirmed Covid-19, family members, community members and health professionals to ascertain which outcomes are most important to them. This should help guide future Covid-19 research projects in all disciplines. 

Public and Patient Involvement and Engagement (known as PPIE) can improve both the science and translational aspects of any research projects, yet this seems to be missing from the majority of current Covid-19 studies. Here, we provide a background into PPIE and Covid-19 research, and outline some of the strategies that psychologists should adopt to ensure their research is better informed by the people for whom it is intended.  

‘With’ and ‘by’ the people

The aim of PPIE is simply stated but much more challenging to implement; that research is being done ‘with’ and ‘by’, as opposed to ‘about’ or ‘for’, people who use services. PPIE is a process interwoven with the entire research process from concept to dissemination. PPIE input into research projects ranges from involvement in design stage of the research (e.g. prioritisation setting) to being involved in running of study (e.g. advisory group, designing study materials, analysing data) to dissemination of findings (e.g. presenting at events, designing dissemination strategy). However, even basic PPIE, such as providing straightforward help with ensuring that Information Sheets and Consent Forms are understandable, can help achieve better validity and acceptability of the research project for participants. More details about ways to involve people in research can be found on the National Institute for Health Research (NIHR) INVOLVE website and how the public can help with health research priority setting through the James Lind Alliance.

Covid-19 led to the development of the Health Psychology Exchange, a collaboration between health psychology professionals during the pandemic. The collaboration has three main aims: 

  1. To provide a point of contact for health and care professionals and policy makers who want to access health psychology expertise.
  2. To provide a learning and sharing environment for health psychology professionals with volunteering, consulting or practice roles related to Covid-19. 
  3. To raise awareness of national and international research activities in relation to health psychology and Covid-19.

A PPIE group was set up within the Health Psychology Exchange with the following activities:

  • To develop a database to include patients, the public and health and social care professionals who can rapidly respond to requests for input into research projects designed by health psychologists and their teams.
  • To develop a toolkit and support for project-specific PPIE planning.
  • To monitor and evaluate PPIE in each project, for example co-production of research projects, commenting on content, contributing to patient information sheets using the GRIPP2 reporting tool.
  • To create a ‘lessons learned’ repository for best PPIE practice.
  • To consider ways of creating a database on PPIE suggestions for research priorities, via Google docs.
  • To use social media (Twitter) to engage and inform people and the academic community about our activities. 

Example of facilitation given by PPIE group

Here’s how one health psychologist researcher was helped by the Health Psychology Exchange PPIE group.

The initial request was for advice on the type of PPIE input required for a study that did not included patients or the public, but where the recommendations of the study may have an impact on patient experience as it may result in changes to healthcare professionals’ practice. The health psychologist investigator shared an early draft proposal and received advice on the following:

  • Value of having PPIE at the design stage to ensure patient expectations of health professionals are considered.
  • Involving health professionals at the design stage to ensure the study is feasible.
  • Identifying the best way to engage health professionals, any potential barriers and the pragmatics of doing research which involves clinicians.
  • Practical considerations in terms of how to get PPIE input including connecting with patient groups, R&D support, timescale of process, financial advice about when and how much PPIE stakeholders are paid, number of stakeholders required and type of questions to ask. 

The outcome of this advice was that the investigator had more confidence in the project design. A clinician and a PPIE contributor were asked for involvement in line with advice received. The advice received will help future projects as the investigator more clearly understood the process at the outset and engagement with PPIE groups will begin much earlier.

Quickly forgotten?

Early on, health psychology investigators informally reported that the urgency of the Covid-19 pandemic meant they did not think they had not had time to include PPIE in their research activities. The process of involvement appeared mystical to some investigators, and misunderstandings about the extent of the role of PPIE in research generally led to it either being left out completely or bolted on once a near top copy of the research project had been developed by the academic team. Investigators who were interested in including PPIE in their proposals appeared put-off by a sense of needing to embrace it completely rather than pragmatically. 

This contrasts with the perspective of public contributors who report that they are keen to help at any stage of research project development and are fully aware of the need for pragmatism, speed and rapid turnaround. It seems likely that the challenges the health psychologist investigators faced were similar to those of academics working in other disciplines. This suggests that involvement is perceived as the ‘icing on the cake’ of research, rather than valued by academics. This may be underpinned by paternalism in that investigators may not think public contributors can provide rapid involvement, despite not actually asking them.   

Prior to the Covid-19 pandemic the NIHR took a stance that PPIE were integral to health research and this needed to be demonstrated on funding applications. However, Covid-19 has exposed vulnerabilities in the PPIE process; for example, the UK Research and Innovation (UKRI) have, to date, funded 27 studies investigating aspects of the Covid-19 pandemic where PPIE input is not clearly visible. The Health Research Authority (HRA’s) own research has found that only 20 per cent of research coming to the Research Ethics Committee at the moment has PPI compared to usual 80 per cent.

The fact that PPIE can be so quickly forgotten suggests it may not have ever been truly embedded in academic research. Such is the concern that the HRA Public Involvement Team recently ran a workshop that led to a position statement suggesting that PPIE in research is “important, expected and possible” during the Covid-19 pandemic2. They are also setting up a register of individual and groups who can help with PPIE that researchers can apply to. Currently, the HRA don’t mandate PPIE but they can stipulate/endorse PPIE and advocate that research will not be funded or deemed ethical if the views of the general public are not considered in some way.

Truly valid and meaningful?

Traditionally, PPIE has not been routinely adopted in psychology-based research, possibly due to the uni-disciplinary nature of some of the topic areas and small amounts of external funding available. It is challenging to balance teaching and research roles where funding is tight or non-existent; it is sometimes easier to build on existing in-house research with easily accessible participant samples such as academic staff and students. Whilst this might be pragmatic for some undergraduate projects it can lead to narrow perspectives when it comes to Covid-19 research and public, policy and practice needs. 

The pandemic has brought science and behaviour change into the public eye and stimulated awareness of the value of research. Psychologists tend to undertake research with people that aims to benefit the public in some way. Health psychologists have a good understanding of the behaviour of others and how it might be changed. Could they be the flag bearers of behaviour change within the discipline by ensuring that public views and perspectives are included in health and social care research, both during and post-Covid-19? This shift would ensure that finite funding resources are supporting research that is truly valid and meaningful for the public.

- Sarah Redsell, PPI Lead, Health Psychology Exchange, Visiting Professor, Anglia Ruskin University, Honorary Associate Professor, University of Nottingham. Contact: [email protected]
- Lynn Laidlaw, Public Contributor/ Involved Patient, Health Psychology Exchange.
- Judit Varkonyi-Sepp, PPI co-lead, Health Psychology Exchange, Research Psychologist, Coaching Psychologist, NIHR Southampton Biomedical Research Centre, University Hospital Southampton NHS Foundation Trust and University of Southampton. Contact: [email protected]
- Sarah Hotham, Chartered Psychologist and Senior Research Fellow and NIHR RDS SE  Research Adviser. Centre for Health Services Studies, University of Kent.

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