How do we best work together in Governance of health research?

Governance is one of the UK Public Involvement Standards, stating that public partners should be involved in research management, regulation, leadership and decision making.  However, there is little guidance related to public involvement in governance functions of health research, either for public partners or research partners.  

Derek, public partner with Vocal, and I have worked together for a number of years and in recent years have been reflecting on what involvement can look like in governance of health research.  

Our joint experience tells us that an increasing number of public partners are working together with academics, clinicians, managers and involvement and engagement practitioners in governance. For example, as part of clinical trial management committees, as Executive and Governance Board members overseeing health research programmes, infrastructure and institutions, and as advisors for national and international initiatives.  

Public partners help to provide oversight, monitor progress, ensure accountability and check institutional processes, as well as informing and influencing policies related to health research.  

What does public involvement in Governance look like? 

Often, I’ve felt ill prepared for being in such governance roles and that over time felt that I was “neither fish nor fowl” 

 In other words, I no longer felt like a patient regularly in touch with other cancer patients undergoing treatments. Neither was I a ‘working, qualified research professional’. Equally I did not want the label of ‘expert patient’.

Derek, public partner

 In some ways governance of health research can feel like a liminal space but we feel it’s  an important one in which to input, learn and influence.  

Working together, we've noticed that strategic and governance roles emphasize strategic thinking, systems analysis, and influencing skills, rather than personal experiences with specific health conditions.  

Often, public involvement in governance is about ‘bringing people in’ to existing hierarchies of power and formal formats. Personally, I have observed the challenges to power-sharing in governance.  

So what? 

Inspired by our conversations over the years, we successfully applied for a National Institute for Health and Care Research Programme Development Grant to explore this topic further. Thanks to this funding, we have brought together a small team of research and public partners now carrying out research to:  

• Explore public partnerships in governance, strategy and decision-making in health and how they relate to 'on the ground' relationships with communities (of identity, geography or practice) 

• Distil the key principles and practices needed for effective public partnerships in governance, 

• Summarise and communicate good practice guidelines based on our research 

As a team, we’ll do a desk review, interview research and public partners, hold sense-making workshops and then shape new guidance collectively. We’ll be exploring questions such as: 
 

• What are the different ways in which public involvement in governance in health research happens? 

• How is equity of voice ensured in often hierarchical governance structures? 

• Does involvement help focus on strategic matters of relevance to patients and the public? 

• How does it contribute to trust and trustworthiness of health research?  

• What impact does it have on strategic and governance-related decision-making?  

• What is the dialogue between strategic public partnerships and the communities who are involved at grassroots? 

We’d love to hear from you  

We’re looking for people to share their experiences of this area of work and who want to hear more about this project. Please get in touch if you’d like to:

• Recommend any reports, presentations or publications on public involvement with governance in health and social care research 

• Be interviewed about your experience of being a public partner in research governance and strategy as part of our research  

• Be updated on this project as it progresses.  

Just email Lissie, Project Manager for this work, elisabeth.fahey@mft.nhs.uk