Case study: Beginning a relationship between the NIHR and an underserved region

Humber and North Yorkshire is home to people and communities with poor health but is also the part of the region that has the least contact with health and social care researchers. A new project from Forum and the PPI Voices Yorkshire and Humber Network aimed to start a relationship between NIHR and this underserved region.

What’s the issue?

The National Institute for Health and Care Research (NIHR) understands that some communities find it hard to get involved in health research. It wants to understand how to strengthen the infrastructure that supports community engagement. Humber and North Yorkshire (HNY) is home to people and communities with very poor health but is also the part of Yorkshire and Humber that has the least contact with health and social care researchers. 

This collaboration between the HNY voluntary sector, the public and NIHR public involvement workers from the wider Yorkshire and Humber region aimed to:

• start a new relationship between the NIHR and this underserved area
• begin to understand existing networks and to co-design a draft Framework for Community Engagement, that has the VCSE sector at its heart and closely links research with the new HNY Health and Care Partnership (HCP).    

What did you do?

In focus groups, 17 researchers, HCP and community and charity leaders and 12 members of the public discussed how they currently work with each other to undertake research and the problems they face. They talked about the engagement teams and networks that are already in place and how these might be ‘joined up’ by a regional Framework. Participants described their challenges in engaging with communities about research but were enthusiastic about the possibilities and opportunities that a Framework might support, such as collaborations between regional academics, communities and partners within the HCP. An ambition for the region of high-quality research that includes community driven research questions and local evaluations of new ideas was discussed, with clear agreement that research must make a difference to communities and to health and care services in the region.   

These focus groups were followed by a co-design event to agree working principles and to begin to understand what the Framework would look like in practice. The information from this event was used to write a draft Framework.

What happened?

The key benefit of the project was the opportunity to make new links, particularly between researchers and the VCSE sector. The discussions allowed us to explore some of the challenges that need to be acknowledged and understood before meaningful engagement can occur at scale.

There were 5 main themes in the conversations:

1. Research in HNY tends to be concentrated in urban areas and siloed. There are increasing expectations for all sectors to engage with communities. It was agreed that high quality engagement needs to happen before any other involvement or participation in research can happen.
2. There are pockets of excellent community engagement but there are many challenges, uncertainties and information and language gaps about research. At present it is unclear what each sector means by ‘useful research’. The VCSE sector does not routinely commission research.
3. The academic sector has specific challenges, which was described as too fragmented, complex and competitive to support meaningful community engagement. Researchers tend to work in siloes and ‘don’t talk to each other’.  
4. There is the potential for shared ambition for community engagement and research that impacts on services and communities themselves, but whole system cultural shift is needed for community engagement and research to work together to underpin health and social care service change across the region. For example, opportunities were identified to capitalise on the notion of partnership working e.g. by using traditional research grants as springboards that can be augmented by community-led questions and flexibly or co-funded research.  
5. A broad range of risks were identified including maintaining the quality of community engagement, sharing power, current fragmentation and silo working, resources and the need to support regional capacity building 

What could other people take from this?

It became clear early in the project that fully achieving our aims would take longer than the timescale of the project. At present the NIHR has very limited engagement in the region, and we identified many gaps in our plan of engagement. We were unable to engage at such short notice with many potential stakeholders, and we cannot progress to wide implementation before those first conversations have taken place.  Additionally the VCSE sector has a very different concept of research and limited experience of working with academic research teams.  The project team agreed that these network gaps and disparities in understanding underscored the need for the Framework and decided to continue the ‘first step conversation’ phase with wider stakeholders after the project period, using the Framework as a prompt for conversation.

Are there any resources/outputs?

At present the project report and Framework can be accessed here. 

What’s next?

The next steps for this project are to continue to discuss the Framework ideas with the HCP and more research teams and VCSE groups in HNY. However at present it is unclear where the research function will sit in the new HCP. The Framework will need some funding to make it work, including people to build relationships with communities and to link communities with researchers. Finally, the team will look for opportunities to put the Framework into practice, to test it and see if it will increase contact between researchers and underserved communities, and ‘join up’ and if it will improve the quality and usefulness of research in the region.