“Health and social care research also has a fundamental role to play in helping to reduce the disparities that exist in health outcomes caused by socio-economic factors, geography, age and ethnicity. Working with partners, NIHR needs to tackle the ingrained injustices that exist in the world of research in terms of who is involved, engaged or participating…”
Professor Chris Whitty, Dr Louise Wood, Best Research for Best Health: The Next Chapter (2021) - NIHR’s current operational priorities.
This Collection explores the importance and value of research that is inclusive. That is, research that fully reflects and addresses population needs. The Collection brings together the messages from a range of important research projects that we have highlighted through our Alerts (accessible summaries of research papers) over the last year. It explores the inequities described by Chris Whitty and Louise Wood and looks at what we should be doing. The Collection forms part of a wider review that we are undertaking within NIHR. We want to see how we can support public participation, engagement and involvement in research that is genuinely inclusive.
Current injustices in research
The areas with the highest burden of disease have the lowest number of patients taking part in research. This was the finding from an analysis of 5 years of data on the participants of NIHR funded clinical trials. This means that diseases which are more common among deprived communities are being studied in healthier populations. Research findings may not be generalizable to communities that face far greater challenges to health and wellbeing.
Many studies have found that people in clinical trials often do not represent those most in need. For example, people taking part in studies on heart failure are 20 years younger on average than real-life patients. Patients in cancer trials tend to have no other conditions; those in diabetes trials are not the ethnically diverse populations typically seen in practice.
This disconnect results in problems, including that:
- benefits and side effects of treatments may not translate to real-world patients
- trial interventions may not be deliverable or applicable to all groups of patients
- important findings specific to different populations may be overlooked
- some groups are discriminated against when inclusion is lacking.
Research that targets under-served populations and captures their needs
A range of studies demonstrated the insight and value of research that targets and engages under-served populations.
One study explored the treatment of people from ethnic minority backgrounds who had dementia - an area that has had little previous research. It found that older Black Caribbean, Black African, and Irish people were more likely to have vascular dementia. These groups may therefore benefit from interventions to improve vascular risk factors such as diabetes, high blood pressure or high cholesterol; the study suggests a need for targeted public health. Other differences - including lower use of antidepressants and a higher likelihood of being prescribed four or more medications - flagged issues worthy of deeper understanding.
Another study explored South Asian women’s attendance at breast screening. When barriers to healthcare access are studied, women tend to be considered as a single group. This means there is little research into barriers that specifically affect women of Pakistani, Bangladeshi and Indian backgrounds. Much previous research has also failed to consider socioeconomic status, or has required participants to speak English. This means the experiences of the most under-served individuals have not been recorded and considered.
Barriers identified by the breast screening study included:
- Women’s reluctance to expose their breasts or discuss breast health with male health care professionals. They were unaware that screening takes place in an all-female environment.
- Family members acting as translators did not pass on all the information given in an appointment, often through embarrassment. The women did not know that the NHS could provide translators.
- There is no direct translation in Punjabi and Urdu for the terms ‘mammogram’ and ‘screening'.
- Lack of literacy means some women would not benefit from letters being translated into their own language, as they would be unable to read them.
One of those commenting on the Alert said:
“The research is a model for inclusive research into a complex intervention with ethnic minority and hopefully other underserved populations. It in turn will generate findings generalisable to the diverse UK population.”
Caroline Mitchell, Senior Clinical Lecturer, Primary Medical Care Research, University of Sheffield
What can we do to make research more inclusive
A major study building on literature reviews, surveys and workshops, as part of a project called Innovations in Clinical Trial Design and Delivery for the Under-served (INCLUDE), has developed a roadmap and made recommendations for improving access to clinical research.
- embedding research within healthcare to improve access
- providing resources and training to build capacity and increase engagement
- educating funders to understand and address the barriers to research
- building long-term relationships between researchers and under-served groups so that patients can be placed at the centre of the research process
- creating a nationwide publicity drive about clinical trials and why they matter
- establishing a baseline to help better understand and address the situation.
A good example of the power of training to increase engagement was the pilot study done by researchers from Kingston & St George’s University. People with learning disabilities are frequently excluded from research. Involving people with learning disabilities in research on learning disability would help make sure that the research addresses the most pressing and relevant issues. The researchers introduced people with mild to moderate learning disabilities to basic research methods and skills. They hoped that trainees would then be able to decide whether they wanted to become researchers themselves. A second aim was to widen the pool of people with learning disabilities ready to work as partners in research or to join research advisory groups.
Six months after completing the course, the graduates reported that they had increased skills, better knowledge of research and greater self-esteem. Several students went on to take up new work opportunities. The lead researcher has received enquiries from researchers who are looking for people with learning disabilities to be co-researchers or advisors on projects they are planning.
As Chris Whitty and Louise Wood highlighted, we need more inclusive research. Without it, we risk reinforcing and not addressing health inequalities. We have provided some powerful examples of research that actively engages with under-served communities. But there is still much to do to fulfil the vision set out by INCLUDE.