In 2023 NHS England committed to increase diversity in research participation. Humber and North Yorkshire Health and Care Partnership was one of 17 Integrated Care Systems (ICSs) across England to receive funding through the ICS Research Engagement Network (REN) programme. This page provides an overview of the work and activities delivered under this programme of work. At the beginning of 2024, we worked with six VCSE Lead organisations to set up Research Ready Community Champions programme across the coastal area of Humber and North Yorkshire. VCSE engaged with sector to recruit and train research ready community champions. There were lots of enthusiasm to be part of the scheme and over a 3-month period the VCSE leads recruited over 80 volunteer champions to support the programme. These champions connect with underserved communities and those who do not normally engage in research to run research events and focus engagement sessions to talk about research, what it is, isn’t and encourage people to be involved in research. They are also the bridge between academic researchers by helping to connect researchers into communities. Some will also support research projects that address local challenges and help support the NHS and local authorities improvement initiatives. In April 2024, NHS England awarded additional funding to further strengthen the programme and to extend in rural North Yorkshire and we are now working with three additional VCSE lead organisations.

Health research plays an integral part in how the NHS develops services and continues to provide high quality healthcare for our population. However, NIHR data has revealed that UK geographies that experience high rates of disease also have the lowest number of patients taking part in research. The areas where there are the lowest levels of research participation also align closely to areas where incomes are lowest, and indices of deprivation are highest. This means that research is often conducted with individuals who are healthier and wealthier, and lacks representation from our diverse society. It is important that people from different communities have the opportunity to participate in research to ensure that treatments, technologies and services reflect the needs of our diverse population. NHS England has committed to increasing participation in the research taking place in the NHS. The Research Engagement Network Development (REN) Programme aims to increase diversity in research participation through the development of research engagement networks with communities who are often underserved by research, and by ensuring diversity in research is considered by integrated care systems (ICSs).

Research has found that UK areas with the highest burden of disease also have the lowest number of patients participating in research, as low participation aligns closely with areas of high deprivation. It was identified that Humber and North Yorkshire’s 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 coastal infrastructure, we proposed building a research network inclusive of our coastal and port towns and communities.

•       Women of childbearing age •       Ethnic minorities •       LGBTQI+ •       Disabled people / people living with disabilities •       Homeless people •       Gypsy and Traveller communities •       Asylum seekers, refugees, migrants •       Geographic disparities: rural and urban area of social deprivation

Research provides the evidence needed for making informed decisions about health and social care practices, policies, and resource allocation. Through research, new technologies, medications, and methods of care are developed, leading to more innovative and effective solutions. Additionally, research helps in understanding health and social care needs and trends, enabling the system to adapt to changing demographics and emerging challenges. It also supports the development and refinement of policies by providing the necessary data and insights to make policies more impactful and relevant. To effectively engage with underserved communities the Research Ready Community Champions programme employs several key strategies. Building trust is paramount, as champions are trusted figures within their communities who can effectively encourage participation in research by overcoming barriers to involvement. Cultural competence is also crucial, ensuring that research is sensitive and appropriate to the specific cultural contexts of the communities. Additionally, champions provide a feedback loop, relaying community insights back to researchers to ensure that research process is participatory and reflective of community needs. By fostering local insights and building strong, trusting relationships, the programme aims to enhance the relevance and impact of health and social care research. Overall, health and social care research enriched by the participation of community champions ensures that the findings are practical, applicable, and can lead to meaningful improvements in health and social care delivery.

A Research-Ready Community Champion plays a vital role in promoting research engagement and collaboration within their community across coastal area of Humber and North Yorkshire ICS. Overview of the key aims of role: 1.    Connect with underrepresented communities to talk about research, what is and isn’t and to advise people on how they can get involved in research 2.    Promote research opportunities on behalf of researchers 3.    Support the delivery of insight gathering and research projects on behalf of ICB, Local Authority, Universities and researchers 4.    Share intel to REN Programme and locally to influence future shaping of services and policy decisions 5.    Attend ICB’s research community of practice meetings 6.    Record impact of their work and champion role What a community champion role entails when working with researchers - Listen to community champions discuss what researchers ask of them, and what skills and contacts they need to fulfil those asks.

The Research Ready Community Champions Programme can support a diverse range of research projects that can significantly impact people, communities, and health and social care. These projects include support for studies on cancer, children’s health, dementia, drug abuse, mental health, and the use of technology to improve health. By engaging with these research areas, community champions help to ensure that the research is relevant and reflective of community needs. This involvement can lead to improved health outcomes, better quality of life, and more effective health and social care services. Additionally, champions play a crucial role in gathering local insights, building trust, and fostering strong relationships between researchers and communities, which enhances the overall impact and sustainability of research efforts. Some of our champions are keen to become researchers themselves, influencing the type of research that is needed for their communities – bottom up approach to research instead of the traditional top-down. Research Community Champions: •       engage with local communities to talk about research •       support researchers to promote clinical trials and connect communities into research •       engage communities to capture their views to help improve local and national health and care services

That research is needed in the following key areas: •       Cancer •       Children’s and Young People’s health •       Dementia •       Drug Abuse •       Health and Neurodiversity •       Impact of long-term conditions on quality of life •       Mental Ill Health / Depression •       Preventative health research •       Service Improvement •       Socially economically deprived •       Special Education Needs and Disability •       Use of technology to improve health Highlighted the following challenges with promoting healthcare research in their communities: •       Lack of information or understanding •       Misconceptions and pessimism •       Apathy towards change •       Lack of trust •       Accessibility and rural transport connectivity •       Language barriers •       Building collaborative relationships

“Initially, most people felt research wasn’t relevant to them, but through the REN programme VCSE helped them to see health and social care research needs feedback from those it affects the most. Participants in the scheme now feel that they can get involved and make a difference” - VCSE representative “As a research champion, I was glad to participate in the various sections of the programme. It helps me to provide my views on the need to carry our research representing all the segments of the community. It also helped to advocate for inclusiveness by all in health and social care research. Research is vital to health, therefore there is need to encompass sex, age, race, religion etc in any research, this will go a long way in achieving a positive result” - Research Champion “This has been really interesting – thank-you” - a community member “This is a very good initiative to get under represented communities involved in matters of health and social care affecting their everyday lives and needs” - VCSE organisation “I would take part in research if it would give me a better understanding on my medical needs” - community member “More support to access services is needed and better access to health professionals” - community member

If you are a researcher and would like to discuss your research opportunity, please contact the VCSE Collaborative or Research Team at Humber and North Yorkshire Integrated Care Board. hnyicb.vcseteam@nhs.net hnyicb-ery.iris@nhs.net We recommend that you join Humber and North Yorkshire’s Research Community of Practice by contacting: hnyicb-ery.iris@nhs.net. Please note: NHS England provided kick start money to set up the champion network, but the champions are volunteers and require reimbursement for their time and expenses (including expenses for communities and members of the public to be involved). NIHR have provided examples of champions costings on the NIHR website: NIHR public contributor payment policy.