Published: 24 September 2021
NIHR has long led the way in partnership working with patients and the public to shape and conduct research in health and social care. In this blog, Jeremy Taylor, NIHR Director for Public Voice, highlights how we plan to improve our work in this area following a series of workshops with the research community and public contributors.
At NIHR, we strive for research that reflects the priorities of patients and the public. And we create opportunities for people to volunteer directly as participants in studies. In response to the Covid-19 pandemic, 1,390,483 people took up these opportunities between April 2020 and March 2021. But we know we still have a way to go to fully meet the public’s expectations of us - so where do we go next?
Developing an improvement programme
This year we’ve been refreshing our Going the Extra Mile strategy - a vision first launched in 2015 for strengthening how we work with patients and the public. We’ve been taking account of all that has changed since 2015, not least the Covid pandemic. My Centre for Engagement and Dissemination (NIHR CED), together with colleagues on NIHR’s Public Partnerships Programme Board are developing an improvement programme with five broad themes. We want the research community to work more inclusively with a diverse range of people and communities and have the skills and support to do this well. We want to ensure that partnership working has a genuine and valued impact on research and makes better use of digital technologies. And we want the NIHR processes that support all this to be fit for purpose.
To further inform this work, we recently carried out a series of workshops with public contributors and the research community. These generated 16 priorities for action in the areas outlined above. The full list alongside a detailed report of the process and its findings is here.
Priorities for public partnerships
Our priorities for action, informed by the areas of improvement highlighted in the consultation, are as follows.
Overall, we must respond to the strong call for NIHR’s interactions with patients and the public to be more inclusive, closer to communities, and conducted so as to make a real difference to the relevance, reach and quality of the research. When it comes to inclusivity, we are being urged to work closer with communities, especially those which have been largely bypassed by research. We need to build long-term, equitable relationships with communities as the foundation for a shared approach to research.
On building skills and capacity, people want to see training that goes beyond basic, a progression path for researchers and public involvement specialists, and a focus on building capacity within communities and voluntary groups too. Turning to impact, we should avoid the trap of ‘measuring’ patient and public involvement as a performance management exercise. The point of assessing impact must above all be learning for improvement. Patients and public contributors need to be part of shaping what is meant by ‘impact’.
On digital technologies, we should scan and learn widely from the good practice that has been developed during the Covid-19 pandemic. However, we also need to connect those who have been left behind by technology, for example by deploying ‘digital buddies’, volunteers who would partner with and support people who don’t have the skills to get online.
Finally, when it comes to NIHR’s own processes and ways of doing things, people want us to do more to sort out perennial problems like the bureaucracy around payments to public contributors, and making it easier for researchers to engage with people at an early stage, before they have secured funding.
So, what do we need to do to turn these priorities - these ideas - into actions?
Firstly, NIHR needs to exert leadership at national level on some important issues. That will include action on payments for public contributors; a national learning and development offer for public involvement; and work to strengthen and extend NIHR’s work on diversity, inclusion and community engagement. These will become a more central plank of our approach to public involvement and participation in research.
Secondly, we want to find ways of continuing the rich and engaged conversations that we had in the three workshops. These events demonstrated the need for – and the value of – bringing the wider involvement community together. These opportunities are too few – and obviously Covid-19 hasn't helped. We heard a plea to ensure that public contributors' voices were not drowned out by those with paid roles in involvement and engagement. So we will take forward plans to meet those needs.
Thirdly, while people rightly expect national leadership, we must avoid the trap of imposing one-size-fits-all solutions. Democratising health and care research is a shared, distributed and co-produced business. We want to create the conditions that encourage bottom-up action: people in different locations and settings offering to run with different parts of the partnership agenda in different ways: piloting, problem-solving, workshopping, evaluating, and above all sharing. We will come up with plans to encourage and support this.
How to get involved
We know a core part of improving how we work with patients and the public is supporting conversations and being transparent about what we are doing. This needs action, not just from us, but from the wider involvement community, whatever your role in research. I ask you to share examples of work that you have done, or are planning, that will advance the five areas of focus. We will compile your responses and present these back to you, not only building a picture of the work and ideas already in place, but also encouraging shared learning and support.
Jeremy Taylor, NIHR Director for Public Voice and Director of the NIHR Centre for Engagement and Dissemination