UK areas with the highest burden of disease also have the lowest number of patients participating in research. Low participation aligns closely with areas of high deprivation.
NHS England has committed to increase diversity in research participation, and Humber and North Yorkshire Health and Care Partnership is one of 17 Integrated Care Systems (ICSs) across England to receive a share of £1.6 million awarded through the ICS Research Engagement Network Development (REND) programme.
Working with the Voluntary, Community and Social Enterprise (VCSE) sector, National Institute for Health and Research and other partners, ICSs have been offered this funding to build new or develop existing research networks and activity to grow diversity in research participation.
Humber and North Yorkshire’s proposal
Humber and North Yorkshire Health and Care Partnership, which has received around £80k from this programme, has a population of 1.7million people over a large geography, spanning urban, rural and coastal areas. The coastal communities in particular pose challenges in terms of health inequalities, deprivation, and access to infrastructure.
It is also recognised that our coastal regions are underrepresented in research and given the relative isolation and sparsity of our costal infrastructure, we propose to build a research network inclusive of our coastal and port towns and communities.
The Humber and North Yorkshire VCSE Collaborative will work through established VCSE Place Assemblies to explore how VCSE organisations serving coastal populations could develop and prepare to become part of a ‘research ready’ programme. This could potentially form the ‘building blocks’ to grow the capacity and infrastructure needed with the coastal communities.
VCSE organisations will then link in with research partners, such as the Local Clinical Research Network (LCRN), Local Authority, primary care and academia to discuss and action any opportunities.
Being ‘research ready’ is based on a pilot carried out by the National Institute for Health and Care Research to understand how networks could build better relationships with communities that are currently under-served by health and care research, and increase their opportunities to participate in opportunities.
Delivering the proposal
This programme will be split into three phases.
Phase one is to identify relevant VCSE organisations and look at what research links there are currently at Place. This is expected to be complete by the end of January 2023.
Phase two will be complete by the end of March 2023 and comprises of two elements. This includes identifying the extent of any existing research partner relationships and maximising these, identifying key target partners, and developing capacity to support VCSE organisations through hosting networking events.
During phase two we will also engage with an academic centre to look at bespoke work and lay foundations for a possible coastal health population research strategy. We will encourage collaboration between the academic centre and academic partners for a wider scope and future sustainability.
The third and final phase will run from March 2023 onwards and create a high-level plan of actions to move this work forward and look at the possible co-development of a strategy with partners.
We are actively looking to identify organisations and partners to be involved in this programme. If you live or work in coastal areas in our region and want to be involved or find out more information, please contact Gary Sainty, VCSE Programme at gary.sainty@nhs.net.