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Making healthcare more equitable for all
"When health research isn’t equitable and inclusive, treatments don’t work for everyone."
A new approach by Queen Mary researchers
Lack of representation is a long-standing problem in clinical trials. This issue often results in treatments that don’t reflect the needs of diverse populations.
Researchers in the SHARE Collaborative at Queen Mary University of London kept this issue in mind when developing the clinical trial design and protocol for the first long-acting injectable treatment for HIV. Their goal was to ensure the life-changing treatment would be implemented equitably and benefit everyone who needs it.
To achieve this goal, and equitable outcomes, the researchers designed the ILANA (Implementing Long-Acting Novel Antiretrovirals) study to be antiracist, antisexist and antiageist from its inception. Their inclusive approach led to outstanding results:
- 53% female participants
- 70% racially minoritised participants
- 40% participants aged 50 or older
These figures exceeded the trial's mandatory recruitment targets. The trial has been highlighted as a good practice case study by the World Health Organization and has demonstrated that equitable recruitment is achievable within HIV research.
Read lessons learned from the ILANA study in Trials.
Supporting other researchers deliver inclusive clinical research
The importance of carrying out inclusive clinical research is well-known. However, it can be difficult to ensure those who take part represent the incredible diversity of our global population.
Building on their experience and expertise, researchers at Queen Mary University of London's SHARE collaborative are sharing their tried and proven methods to help others make their clinical research more inclusive and be confident that their findings benefit everyone.
How to embed inclusivity at all stages of your research
1. Increase representation and diversity in your research teams
Our research team includes LGBTQ+, neurodivergent and disabled researchers, as well as researchers from racially minoritised backgrounds, some of whom have lived experience of the health conditions that we study and the majority of whom are female. Having these differing perspectives is crucial to ensure we reflect on the people that we serve. Study teams should continually reflect on their identities and positionalities, and how these influence power dynamics and whose voices are heard within the research process.
2. Determine who is affected by the condition you’re researching
Find out who is being excluded from current research into the condition, and to what extent. Before carrying out your clinical research, evaluate what other work has been done in this area, specifically in relation to inclusion and representativeness and considering how sociodemographic factors might lead to differences in outcomes.
3. Build capacity, sustainability, and accreditation with community partners
Our patient and public involvement and engagement (PPIE work) involves a renumerated Community Advisory Board, which includes groups often under-represented in health research such as women, and LGBTQ + and racially minoritised people. The Board ensures that meaningful involvement from people with lived experience informs both our strategic direction and the research questions we pose and grants we apply for. For each study, we also have a study PPIE steering group with members who have lived experience specific to that research question to feed into every stage of that particular study.
4. Make your public involvement meaningful from start to finish
Include people with lived experience of the health condition you’re investigating in your research and/or trial, and if possible, who have other lived experiences too, whether they’re currently receiving treatment or not. Also aim to include carers, those who use health and social care services and organisations that represent service users in all stages of the research process.
5. Embed inclusivity as a central element in the study design, not a ‘nice to have’
Recruitment methods and targets, eligibility criteria, study materials and processes should be designed to explicitly include and support the involvement of underserved groups and to promote equitable recruitment and retention. Be ready to ask – and answer through your study design – questions like ‘what formats and languages should materials be available in?’; can the costs of travel and childcare be reimbursed?’; ‘where are we recruiting participants from?’ and more.
6. Make inclusivity targets mandatory, not aspirational
Inclusive research takes time and care, but it is important to do so because research that is not inclusive is harmful and wasteful. Careful site selection, incorporation of targets into the study protocol, close monitoring of recruitment, and applying caps and competitive recruitment where sites are overrecruiting groups well-represented in research can help to enforce inclusivity targets. Also consider how inclusivity targets can be factored into trial analysis plans. Subgroup analyses pose challenges for interpretation, and yet, such analyses are often the best evidence we have of the potential effects of interventions on health equity and are important to patients.
7. Recognise the contribution and involvement of all those involved in research, including community partners
Set out clear guidelines on what you mean by authorship; how you intend to support academics at all stages of their research careers; and support community colleagues to be meaningfully involved in your outputs. This should include equitable recognition for those involved in the study, such as co-authoring; when and how you’re sharing information throughout all stages of research with those involved; and opportunities for co-producers to present or disseminate findings.
Guidance-on-equitable-research [PPT 343KB]
