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Why reaching out to communities is key to putting people first in research

Published: 26 January 2023

We’ve made significant progress in improving how we work with patients and the public, but we need to work harder to reach out to communities if we want to make research truly inclusive, writes Jeremy Taylor, NIHR’s Director for Public Voice.

In 2015, the NIHR published Going the Extra Mile - a ten-year roadmap for doing health and care research in partnership with patients, carers and the public. Now 2015 seems like a distant age - pre-coronavirus and pre-Brexit- and yet Going the Extra Mile has stood the test of time; providing a framework for embedding public partnership in the research we fund and support.

It was the platform for developing the highly regarded UK Standards for Public Involvement, for celebrating and validating co-production and for creating my own role of Director for Public Voice, to spur coordination and improvement from the heart of the NIHR. But this year we will be refreshing and updating it.

Building on the basics

There are many case studies of excellence in public involvement and examples of new approaches enabling patients to lead the development of new research ideas.

But alongside this are dispiriting instances of things not working. For example, BMJ Open recently shared findings that suggest that most health research does not report public involvement. I am glad to say that NIHR was the best performing funder, but we can do better, nearly half the NIHR studies reported no public involvement.

Another example is payment for public contributors. Despite excellent payment guidance, the policy of paying public contributors for their time does not fully align with rules concerning tax and benefits. This has the unintended effect that it becomes hard to involve the very people we most want to involve.

In updating NIHR’s commitments for public partnerships, we need to build on the best of what we’re currently doing but we also still need to get the basics right - and get them right consistently. Fortunately there is much momentum and good practice to build on.

Where next?

The refresh of Going the Extra Mile is partly foreshadowed by our “next steps for working in partnerships with patients and the public” - NIHR’s improvement plan for Public Partnerships. It also aligns with our work involving partners across the health and care research sector to first declare and then honour a shared commitment to public involvement.

Nowhere is the need for progress more deeply felt than in making research more inclusive and representative of the populations it serves. Going the Extra Mile states:

“We have been struck by the degree to which researchers and public contributors have encountered barriers when trying to work with different communities and populations”.

Those barriers have not gone away, but we are further forward in understanding them, and in developing solutions. We now have an NIHR equality, diversity and inclusion strategy and a programme of work to bring research to underserved regions and communities.

Covid-19 highlighted that those communities worst hit by the pandemic were also less likely to be engaging with research - either as public contributors or as study participants. The same pattern is played out repeatedly. It challenges not only our fairness as a research community but our seriousness about tackling health inequalities.

Reaching out

What are the solutions? Above all, it is about how we engage with communities. It means reaching out and understanding people in the context of their lives - whether that’s in hospital, prison or on the street. It means giving something back in return so our research is not experienced as extractive or exploitative. It means learning about the trauma suffered by some groups, and how this has shaped their perspectives on health, care and research. This is illustrated in this powerful poem exploring the lived experiences of Black men in the healthcare system. It means gaining cultural competency, and doing our best to earn trust by being trustworthy. It means understanding how an appalling cost of living crisis is affecting the lives of millions.

There is much to be gained by applying the approaches developed for the NIHR INCLUDE project , more recently, in the Research Ready Communities pilot scheme and from using the Race Equality Framework self-assessment tool. Our recent review on promoting inclusion in public partnerships sets out an agenda for action which is likely to be very influential in shaping our refresh of Going the Extra Mile.

When we published Best Research for Best Health: The Next Chapter in 2021 it felt right for us to strike a note of some humility about where we had got to on public partnerships. We said: “We know that we have much further to go if we are to ensure that the involvement of diverse patients, service users, carers and communities in research is inclusive, consistently makes a difference and avoids tokenism.” Awareness of that continuing gap will very much be our guide in the work we carry out this year.

Find out more about what we’re doing to improve how we work with patients and the public and stay tuned for further updates as we refresh Going the Extra Mile 

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