“No matter how complicated the research, or how brilliant the researcher, patients and the public always offer unique, invaluable insights.”

The quotation above from Professor Dame Sally Davies, former Chief Medical Officer in England, is often cited to underline the importance of public involvement in health and social care research. Public and Community Involvement, Engagement and Participation (PCIEP) is so important because patients, their families, and members of our local communities offer skills, knowledge and perspectives on research that are different to and complement skills, knowledge and perspectives from researchers.

If we take the NIHR INVOLVE definition, public involvement is research done ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them. When public involvement works well, and it is embedded in research, there is a partnership between members of the public and researchers throughout the research cycle: from shaping the embryonic ideas of a new project right through to ensuring research evidence from a completed project is taken up in practice. There are lots of ways to think about public contributors: ‘critical friends’, ‘golden threads’ running through the rich tapestry of research or ‘grit in the oyster’, which creates a pearl. Whichever term you choose, we know we cannot do without the ‘unique, invaluable insights’ our public partners can offer.

The ARC-WM ‘triad’ model for Public Involvement

ARC WM, which evaluates service interventions, is wholly committed to embedding the public voice. These service interventions belong to the service and to service users. They are of the service, NOT of the ARC. In some cases, service interventions would be going ahead even if there was no ARC to modify or evaluate them. If we assume that service users are mostly interested in services that they and their loved ones will receive, it makes no sense to ask for involvement from patients and the public only on the research for which ARC is responsible and not on the service change for which the service is responsible. Public Involvement in ARC WM, therefore, will be a ‘triad’ model for collaboration between service managers, public contributors and researchers covering all stages of implementation and research.

Building on our processes for involving the public in CLAHRC WM, we have clear structures in place to embed the public voice at all levels in ARC WM, and resource to support activities, including a full-time Public Involvement Lead. Importantly, we have incorporated mechanisms to reflect on our public involvement activities, which will help us to learn from our experiences and further improve our ways of involving the public in our research. “No matter how complicated the research, or how brilliant the researcher, patients and the public always offer unique, invaluable insights.”

In 2015, NIHR INVOLVE published, Going the Extra Mile, a document setting out a long-term strategy for public involvement. ARC WM’s progress in aligning to Going the Extra Mile will be reported in future ARC WM News Blog articles. However, at this important juncture, whilst we should acknowledge that we need to work hard to ensure public involvement is embedded throughout all our activities in ARC WM, we should also reflect on the fact we will be building on strong foundations and we have an environment that is conducive to ensuring strong partnership working with members of our local communities.

The two quotes below illustrate the experiences of a researcher and a public contributor in CLAHRC WM.

As Public Involvement Lead for ARC WM, my hope is that in five years’ time public contributors still feel that they ‘can and do’ make a difference, and that researchers will continue to be ‘puzzled and wowed’ by insights from members of our local communities.

“We really can and do make a difference!” -- Jane Whitehurst, public contributor.

“I started working in the CLAHRC WM with only a vague understanding of the possible contribution of patient and public involvement (PPI) advisors. As I’ve worked through the different projects with the kind, patient, and sometimes appropriately critical support and advice that we’ve been given by our public contributors, I’ve been alternately puzzled and then totally wowed by the difference that their input has made to our work and to its value and reach.” -- Aileen Clarke, Theme Lead, CLAHRC WM.