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It's time for patients, service users and the public to lead development of new research ideas

PDG blog 2022

The insight and input of patients, service users and the public has rightly become a standard part of research. Now research teams must share the reins with public contributors and allow them to take the lead, write Public Contributor Anica Alvarez Nishio and Steven Blackburn, NIHR Research Design Service West Midlands and Keele University’s Public Involvement Lead.  

Patient, service user and public involvement and engagement is now a necessary part of any research funding application. While this shows the strides that have been made, many funding applications remain researcher-generated. The involvement of the public is still often a side dish rather than the main course. This can inhibit the creative drive of research proposals, leading to applications whose public involvement and engagement activities can risk appearing formulaic.

Involvement tends to be restricted to patient, service user and public contributors prioritising pre-determined questions, attending focus groups and workshops, or adjusting plain English summaries - a transactional approach where research teams set the agenda.  

There have been many great individual members of the public who have provided their perspective and input to NIHR research (and we are extremely thankful to these people). But now it’s time to drive forward novel ways of involving and engaging with new and different people and groups, benefiting from a broader range of lived experience.

Pushing boundaries

The COVID pandemic has brought to light many of the ethical issues surrounding health and social care. This, along with the increasing impact of multiple long-term conditions and the challenges posed by new technologies, means there is a pressing need to bring patients, service users and the public even more deeply into the core of research.

While once there was a lack of knowledge about the purpose or importance of patient, service user and public involvement and engagement - and a lack of skill among both researchers and the public on how to implement it - now there is both.  Building on this, the next logical step is to integrate it further into research proposals.  

Co-producing research projects that matter to communities doesn’t just happen overnight. Relationships take commitment, time and effort to nurture; individuals - both researchers and public members - need spaces and opportunities to engage with each other and collaborate; and patience is needed to let ideas and potential solutions evolve. 

A quiet revolution

Patient, service user and public involvement and engagement has long been a key part of NIHR’s mission. Providing funding for partnership working at the start of the research process, at pre-application and pre-award stage, so that long-term relationships can be built and embedded is now part of the NIHR Improvement Plan for patient and public involvement, engagement and participation in health and care research

The NIHR Programme Development Grants call for Developing Innovative, Inclusive and Diverse Public Partnerships plans to build on this commitment through funding a series of awards that will be contributor-led or embrace true partnerships between the public and researchers. The public will not be a sounding board for new research ideas, but actively generate them. Community groups, charities and faith organisations will be encouraged to partner with researchers to co-develop proposals for meaningful projects with a direct impact on them and their constituents. Researchers will then help them turn these ideas into pragmatic proposals.     

This swapping of the direction of travel may sound like a small change, but it is revolutionary. It fundamentally shifts the balance of established power structures. It directly addresses inequity. It foregrounds the needs of communities. It gives agency and voice to those previously excluded. 

The public members of NIHR funding committees are proud and excited to have been at the forefront of developing this initiative. They have determined the criteria and will lead the funding committee, encouraging and sustaining new ways of partnership working. This is true citizen science.

Anica Alvarez Nishio, Public Contributor, and Steven Blackburn, Public Involvement Lead at NIHR Research Design Service West Midlands and Keele University 


The views and opinions expressed in this blog are those of the authors and do not necessarily reflect those of the NIHR or the Department of Health and Social Care.