“People-focused research in the NHS simply cannot be delivered without the involvement of patients and the public. No matter how complicated the research or how brilliant the researcher, patients and the public always offer unique, invaluable insights.” (Professor Dame Sally Davies)
The NIHR, under the leadership of Professor Dame Sally Davies, has championed patient and public involvement, engagement and participation. The NIHR aims to improve the health and wealth of the nation through world-class research, and strong and meaningful patient and public involvement is integral to this.
The tenth anniversary celebrations for the NIHR present a valuable opportunity to reflect on how patients and the public make a difference to research. Whilst great steps have been taken to ensuring that patients and the public are involved, participate and engage with research, the journey to achieving a meaningful partnership between patients, the public and researchers is a long one, with obstacles still to be overcome.
In order to take stock of the progress already made with regard to patient and public involvement, engagement and participation, the NIHR commissioned Simon Denegri, Chair of INVOLVE and the NIHR National Director for Patients and the Public, to convene the ‘Breaking Boundaries Review Panel’. The final report, ‘Going the Extra Mile’, was published nine months later, setting out a clear vision for the direction of patient and public involvement, participation and engagement. The strategy is clear:
“Within the NIHR, such is the extent to which the public have become involved that research is increasingly becoming a joint venture between patients and the public, researchers, clinicians and health professionals. If we are to meet the health and social challenges of the future then these partners must be empowered, encouraged and supported to work even closer together.” (Breaking Boundaries, p.8)
Part of this vision is ensuring that patient and public involvement and engagement is meaningful and that developing close relations with patients and the public is second nature to the research community. Patients and the public can be involved at all stages of the research cycle, and by involving and engaging with patients and the public, researchers can ensure that research is relevant, acceptable and appropriate.
From the outset, CLAHRC West Midlands has demonstrated a clear commitment to working in partnership with patients and the public. Our PPI Advisors are represented on each of CLAHRC WM’s themes and the patient and public voice is heard on Steering and Executive Committee level through representatives elected by CLAHRC WM’s Advisors. The PPI Advisors have their own Advisory group, which has developed its own Terms of Reference, and the Advisory group meetings are a useful forum to exchange ideas and share good practice. CLAHRC WM is constantly exploring new ways of involving and engaging with patients and the public: this very news blog now has a dedicated ‘PPI Section’ and the website has been developed with PPI Advisors to make it more accessible. In particular, our PPI representatives are selected at competitive interview. Wherever possible we appoint representatives who also advise the NHS in carrying out its statutory obligation to consult on service change. In this way we seek to line up service change and research – our CLAHRC is driven by service change, so it makes little sense to separate the patients and public who advise on the service from those who would advise on the research – the service change and the research are integrated so the advice should also be integrated.
Having strong patient and public involvement and engagement embedded in each of its themes and present at all organisational levels helps CLAHRC West Midlands to produce world-class research. CLARHC WM’s projects demonstrate the different ways patients and the public can work in partnership with researchers at all stages of the research cycle. From working with researchers before a project even starts to ensure that the right questions are being asked right through to helping disseminate findings to wider audiences when projects finish: patients and the public are involved in all stages of the research cycle.
CLAHRC West Midlands is committed to sharing its knowledge and experience about patient and public involvement through regional and national networks (such as PILAR) and by publishing examples of how researchers have worked meaningfully with patients and the public to achieve better outcomes. But although CLAHRC WM is already demonstrates areas of good practice in working in partnership with patients and the public, it’s important not to rest on our laurels. CLAHRC WM should explore new ways of ensuring meaningful participation, engagement and involvement with patients and the public. CLAHRC WM should make sure that it makes best use of the ‘added value’ patients and the public can bring to research projects and should also seek to overcome some of the barriers to achieving meaningful patient and public involvement and engagement, and be creative and innovative in its approach.
Tennis player Arthur Ashe stated: “Start where you are. Use what you have. Do what you can.” PPI in CLAHRC WM is built on strong foundations and we have some excellent resources to draw upon. We should now do ‘whatever we can’ to ensure patients and the public continue to make a real difference to our world-class research.
— Magdalena Skrybant, PPIE Lead