Programme Manager at EDIS (Equality, Diversity and Inclusion in Science and Health), London, UK
Biomedical, medical and health research needs to represent the diversity of the population to be truly beneficial for everyone. When we talk about diversity and inclusion in science research, the focus tends to fall on researchers and scientists, but the unintended consequences of poorly designed studies and trials can be life-threatening.
The recent spotlight on clinical trials and drug responses is a powerful example of why trial design and research needs to be disrupted. Sex differences in drug responses, including adverse side effects, are now recognised (Carey et al., 2017) and the historic exclusion of women from clinical trials and even the exclusion of female mice from pre-clinical research (Karp and Reavey, 2018) are known driving factors for why drugs fail. A study in 2001 found that of the 10 drugs withdrawn from the market since 1997, eight posed greater health risks for women than men (Heinrich, 2001). This is just one part of the diversity and inclusion problem within research (although possibly the aspect with the most traction and evidence at present).
Another important issue is increasing the diversity of patients and public members involved in health research (PPI) initiatives. The National Institute for Health Research (NIHR), supported by the Standards Development Partnership, has included “Inclusive Opportunities” in its National Standards for public involvement in research (NIHR, 2018). This was built on an understanding that diversity and inclusion is important for public involvement in research both for improving the research itself (Crocker et al., 2018), and for improving health outcomes for all or for those at higher risk of health problems (Born in Bradford, 2018).
Improving the design of trials and who takes part in them can be resolved by a diverse workforce. Currently, black and minority ethnic individuals and people with disabilities remain underrepresented compared to the UK working population (Advance HE, 2018). A greater understanding of who is benefiting from research, and more importantly who isn’t, needs to be developed by researchers and funders to redirect focus to those missing out.
So, what is the science community doing to ensure inclusive practices yield results that are truly representative of today’s diverse society?
Challenging health inequalities underpins The Equality, Diversity and Inclusion in Science and Health (EDIS) Symposium for 2019. EDIS is a coalition of 14 organisations in the science and health sector working together to improve equality, diversity and inclusion. This year’s focus is on research, with the symposium bringing together researchers and leaders in their fields with the aim to change the way we design and conduct our research. Inclusive research and experimental design is crucial for health equity, and systematically leaving any group behind in health advances is both poor practice and unethical.
The symposium (held on 9 September at The Francis Crick Institute, London) will explore several topics including sex as a biological variable, ethnicity and ancestry in genomics studies, diversity in clinical trials, the impact of diversity on the power of Artificial Intelligence in health, and BAME (Black, Asian and Minority Ethnic) participation in health research. The event will inform, inspire and give researchers, funders and policy-makers a chance to input on the future of how we acknowledge this problem and how we change it as a sector. We hope you can join us! Sign up here.
The exciting speaker line-up includes:
- Londa Schiebinger web.stanford.edu/dept/HPST/schiebinger.html
- Ewan Birney ebi.ac.uk/about/people/ewan-birney
- Robin Lovell-Badge crick.ac.uk/research/find-a-researcher/robin-lovell-badge
- Bella Starling research.cmft.nhs.uk/our-team/bella-starling
- James Wilsdon sheffield.ac.uk/politics/people/academic/james-wilsdon
- Peju Oshisanya wocip.org/wp-content/uploads/2018/09/Peju-Oshisanya-Bio_WOCIP2018.pdf
Advance HE (2018). Equality in Higher Education: Statistical Report 2018.
Born in Bradford (2018). Impact of our findings. [Online] Available at: https://borninbradford.nhs.uk/our-findings/impact-of-our-findings/ [Accessed 9 May 2019].
Carey JL et al. (2017). Drugs and medical devices: adverse events and the impact on women’s health. Clinical Therapeutics, 39(1), 10 – 22.
Crocker JC et al. (2018). Impact of patient and public involvement on enrolment and retention in clinical trials: systematic review and meta-analysis. BMJ 363, k4738.
Heinrich J (2001). Most Drugs Withdrawn in Recent Years had Greater Health Risks for Women. General Accounting Office-01-286R.
Karp NA & Reavey N (2018). Sex bias in preclinical research and an exploration of how to change the status quo. British Journal of Pharmacology.
NIHR (2018). National standards for public involvement. [Online] Available at: https://sites.google.com/nihr.ac.uk/pi-standards/standards/inclusive-opportunities [Accessed 9 May 2019].