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 organisations 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.
In 2020/21 over 1 million people were recruited into COVID-19 studies across the UK, leading to greater understanding of the disease and how to treat it, and of course the vaccine. There are research studies taking place now involving people with a wide range of long term conditions, diseases, disabilities as well as health volunteers.
NHS England are a key delivery partner of the Government’s National Vision For Clinical Research published in March 2021 and the underpinning implementation plan published in June 2021 and The Life Sciences Vision published in July 2021.
In November 2021, 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.
In November 2022, NHS England invested £1.6 million to support integrated care systems (ICSs) and their project partners to increase diversity in research participation across their geographies. The funding will support the development of new or expansion of existing research networks that reach out to local stakeholders, especially the local voluntary, community and social enterprise (VCSE) sector and engage communities in local research priorities.
The National Institute for Health Research (NIHR) is the research arm of the NHS. They provide funding for research studies as well as academic training, facilities, career development and research capability development. See the NIHR website for more information on NIHR’s support offer.
Pursuing the use of evidence and evaluation will improve how we measure the impact of our work, meaning we can learn from what works well, and what doesn’t. We wish to foster a culture in the NHS that seeks out research evidence and applies this evidence in decision-making. All of this will be underpinned by a strong infrastructure that is supportive of research and evaluation.
Continuing funding after the completion of a clinical trial
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
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, National Institute for Health and Care Research (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.
Treatments need to meet the needs of all groups that make up our society. 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.
NHS England published ‘Increasing Diversity in Research Participation: A good practice guide for engaging with underrepresented groups’, which involved six underrepresented communities between March and July 2022 and 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.