Published: 15 December 2020
Where next for patient and public involvement in research? Jeremy Taylor, Director for Public Voice, and Tina Coldham, public contributor from the NIHR Centre for Engagement and Dissemination (CED), consider this central question and how the centre can take forward the work previously coordinated by NIHR INVOLVE.
Since inception in 2006, NIHR has encouraged two-way engagement between the public and research-community; the meaningful involvement of thousands of people in shaping research; and the participation of hundreds of thousands as volunteers in trials and studies. These are interconnected strands of what our new Centre, for simplicity, calls ‘public partnership’. In important ways NIHR has set a lead, but the world moves on.
The challenges of 2020
Change has been particularly plentiful in 2020, when the research community’s response to the Covid-19 pandemic raised questions about its commitment to public involvement. Furthermore, the requirements of social distancing provided a crash course in digital engagement.
The pandemic highlighted a huge diversity problem in public partnership: NIHR research showed those at higher risk from Covid because of their ethnicity were also much less likely to be engaged in research. Meanwhile, the Black Lives Matter protests put the spotlight on race inequality in health and other walks of life.
Of course, public involvement in research was evolving long before 2020, but the events of this year have accentuated long-standing problems, accelerated change and given organisations permission to be more self-critical and more radical. We shouldn’t waste a crisis.
Areas for improvement
Back in May, I wrote about my aspiration to make public involvement simple, normal and universal. Building on these ideas, I have been working with colleagues across NIHR, including public contributors, to identify five areas where we intend to make progress.
Firstly, the health and social care research world needs to become more inclusive and democratic in its relationships with communities, ensuring a much greater diversity of people take part. Initiatives like NIHR Include and the new Race Equality Public Action Group will help as part of NIHR’s broader approach to promoting equality, diversity and inclusion in research.
Secondly, it should become easier for people to learn about and engage with health and social care research digitally (while not making things harder for those who are not online).
Thirdly, we want to strengthen the cycle of learning and improvement in public partnership. We need to get better at sharing learning from people’s successes but also from their struggles and failures. This requires safe spaces and can’t just be subsumed into mechanisms for assurance and performance management (important though these are).
Fourthly, people need help to do patient and public involvement well. Resources like the UK Standards for Public Involvement are important, as is the library of INVOLVE materials, currently being updated. Alongside this, public contributors, involvement staff and researchers would benefit from a stronger and more coordinated offer of training and peer support, while involvement staff would welcome a better (or any) career structure.
Finally, and underpinning all this, we are having a fresh look at NIHR’s own incentives, requirements and processes for public partnership. There is likely to be scope for improvement. We need robust mechanisms of meaningful involvement that can work at speed, for example if another wave of urgent research is required.
A take from Tina
Tina Coldham adds:
“It is clear that this year has been like no other for us. Our ability to say a fond farewell to NIHR INVOLVE was thwarted by Covid-19 as we all disappeared into lockdown, wondering what this scary new world was going to be like. So, the process of setting up the new NIHR CED has been challenging against the backdrop of a world pandemic. But as a public contributor closely linked to the old centre, I made a pledge that I would carry on by helping NIHR CED take shape. I firmly believe in the overall aims of better engagement, meaningful involvement, and greater participation in the research work of NIHR.
“None of the past achievements would have happened without the passion and dedication of public contributors working alongside equally dedicated NIHR staff. This year’s challenges have given us the opportunity to take stock of where we are. I feel very hopeful that by working together and focusing on the five areas Jeremy has outlined above, NIHR will be able to work with a greater number and wider diversity of people in new and innovative ways – as well as those tried and tested.
“What is important is the value of partnership working, galvanising energy and ideas. This will enable NIHR itself to learn and offer learning opportunities for public contributors, as well as being nimble to react to new challenges ahead. It is clear from 2020 that any ‘public partnership’ needs a true co-productive approach with a firm emphasis on improvement. Time is of the essence.”
Jeremy Taylor continues:
This improvement programme is being developed by a cross-NIHR board coordinated by the CED. We will be doing further work in partnership with the public involvement community to identify specific priorities for action within each of these themes, over the coming months. In the meantime, feel free to share your ideas by emailing me at firstname.lastname@example.org