Guidance is available to help integrated care systems to maximise the benefits of research for their diverse populations. This guidance sets out what good research practice looks like, and supports integrated care boards in fulfilling their research duties.
Research is the attempt to derive generalisable or transferable new knowledge. Research is vital in providing the evidence we need to transform services and improve outcomes, such as in developing new models of care, redesigning urgent and emergency care, strengthening primary care and transforming mental health and cancer services.
Historically, the UK has a rich heritage of research and invention in health care. Around 25% of the world’s top 100 prescription medicines were discovered and developed in the UK.
By fully integrating research into our organisation, we can outperform others that do not, leading to better quality care and improved use of resources. A lot of health research is carried out in the NHS, with recruitment and follow-up often taking place in clinical settings. We see 100% of acute, mental health and specialist trusts taking part in research and an increasing number of research studies being undertaken in the community and primary care.
NHS England a key research delivery partner
NHS England is a key delivery partner of the government’s National vision for clinical research published in March 2021, the underpinning implementation plan published in June 2021, and the Life sciences vision published in July 2021.
In November 2021, the guidance Making research matter was published setting out a policy framework for developing and investing in nursing related research activity across the NHS.
In January 2022, the Allied health professions’ research and innovation strategy for England was published, containing a definitive collective national reference statement that encompasses and supports the existing research and innovation strategies of all the Allied health professional associations.
NHS England policy sets out the limited circumstances in which ongoing treatment may be funded by NHS England for participants of non-commercial trials ahead of a routine clinical commissioning (funding) decision being made.
We work closely with the National Institute for Health Research (NIHR), the research arm of the NHS. It provides funding for research studies as well as academic training, facilities, career development and research capability development. In addition, through Be Part of Research NIHR supports participation on research in a wide range of long term conditions, diseases and disabilities. See the NIHR website for more information on NIHR’s support offer.
Developing treatments for all: Increasing diversity in research participation
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 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 it conducts, focusing great effort into engaging those groups and communities who have historically had lower levels of participation, to ensure the needs of all are reflected in the way the NHS develops its services and treatments.
The Research Engagement Network (REN) Development 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).
Launched in 2022, NHS England and the Department of Health and Social Care (DHSC) have funded all 42 ICSs in England to grow their local research engagement networks by working with local voluntary, community and social enterprises (VCSEs) to engage underserved communities. In addition, a further nine teams have now been funded to plan how to address specific existing barriers to inclusion in research such as language, cultural barriers and / or age limitations and / or restrictions across a range of conditions and clinical or care settings.
Furthermore, NHS England has published ‘Increasing diversity in research participation: A good practice guide for engaging with underrepresented groups’, which provides practical insights for researchers on how to engage more diverse participants in health research. More diverse participation will help ensure that the health service continues to serve and be available to all.
The researcher guide identifies challenges to participation from these groups and provides practical tips to help researchers address these, and wider barriers to community participation in research, including:
- Spending time with groups and communities to understand their individual needs and what is important to them.
- Building trust by involving local advocates for the community or group. Local advocates often understand how to engage with communities in ways that are accessible and engaging. Working with local advocates supports researchers to meaningfully engage with the specific groups. They could also help break down language barriers.
- Giving groups and communities more control over the process and in research design to help build confidence.
- Taking time to support communities to build up their capacity, knowledge and understanding so people can make more informed decisions about whether they will take part in future health research and clinical trials.
- Considering where cultural and religious sensitivities mean that different approaches to support research participation are needed.