Ending the ‘diversity gap’ in research: Shadow Science Minister joins pharma experts and BAME leaders to take action

Monday 9th November

Representatives from Parliament, the pharmaceutical sector and national bodies are coming together today (Tuesday 10 November) to discuss the need for a national policy to demand greater representation of Black, Asian and minority ethnic (BAME) people in research. 

Currently, few people from BAME communities are recruited into clinical trials – according to one UK study, only around five percent of people from BAME groups who were surveyed had ever participated in medical research despite accounting for around 14% of the UK population. Reasons for this are complex, including issues such as cultural barriers and lack of knowledge of clinical trials.

It is widely acknowledged that this under-representation of ethnicity in research risks treatments being developed that may not be wholly effective for all populations.  Between 2008 and 2013 around one in five newly approved drugs demonstrated differences in treatment response across ethnic groups leading, in some cases, to doctors prescribing drugs differently according to ethnicity

More urgently, COVID-19 poses a greater risk to BAME communities yet only six of the 1,518 COVID-19 trials registered on ClinicalTrials.gov, currently collect data on ethnicity. And of the 270,000 people who had signed up to the NHS Vaccine Registry to take part in COVID-19 vaccine trials in the UK, 11,000 are from Asian or British Asian backgrounds and 0.4 percent are Black, African, Caribbean or Black British.

The event, Road to Equality: should diverse representation in UK clinical trials be mandatory?, is a live, virtual discussion where a panel of speakers, including Chi Onwurah MP, Shadow Minister for Digital, Science & Technology, will discuss why barriers to greater patient diversity in research still exist and the benefits and challenges of introducing a mandatory national policy to overcome this.

Chi Onwurah MP said: “It seems to me that it’s scientifically inadequate for trials not to represent the community that they’re going to be treating, so one of the reasons why it’s really good that we’re having this event is to understand how that has been allowed to continue for so long and the ways in which we can address it. I’m hoping to take away an action plan as to how we can achieve much better diversity, or much more representative diversity, in medical trials.”

The event has been organised by three leading clinical trial patient engagement companies – Innovative Trials, COUCH Health and Egality – who recognise the continuing inequality in patient representation within research and are calling on the industry to change how it approaches diversity.

Kate Shaw, CEO of Innovative Trials, will be chairing the event. She said: “Achieving greater diversity of patient populations in trials has been a long-running challenge, but this year has shown without doubt that we can no longer take baby steps to resolve it. The reality is that we cannot develop effective treatments, vaccines and cures if we don’t involve all patient populations. A mandatory national policy is the way forward if we are to kickstart real action in this area – it’s vital for the future health of our nation.”

Ash Rishi, CEO of COUCH Health and the Demand Diversity campaign, said: “Clinical trials must become more inclusive – it’s the only way to develop effective treatments. For example, we know that some blood thinning treatments appear to be less effective at preventing blood clots in black patients with stents. Other treatments may cause more side effects in certain groups. Drug licensing and regulatory bodies are increasingly asking for evidence of drug safety and efficacy in diverse populations, which shows how important this issue is and is in itself another reason why we must take decisive action to end this inequality in healthcare.”

Annette Jack, founder of Egality, said:Despite particular ethnic groups being more likely to develop conditions such as Type 2 diabetes and heart disease, and have a greater risk of dying from COVID-19, those who participate in health research remain overwhelmingly white. It’s essentially discrimination because some populations may subsequently not be able to benefit from certain treatments in the same way as others. Trials must become fully inclusive so that medicines can be fully investigated within the patient populations that might need them most. This is why we have come together with leading figures to investigate a way forward that will lead to the right patients being recruited into research.”

For more information about the virtual Road to Equality panel discussion, visit https://www.clinicaltrialdiversity.info/

1 –  Harrison, E. K. & Smart, A. (2016). The under-representation of minority ethnic groups in UK medical research. Ethnicity and Health, doi: 10.1080/13557858.2016.1182126 http://openaccess.city.ac.uk/14545/

 2 – RP Symonds et al. Recruitment of ethnic minorities into cancer clinical trials: experience from the front lines. British Journal of Cancer. 2012. 107(7): 1017–1021. Doi: 10.1038/bjc.2012.240

 3 –A Ramamoorthy, MA Pacanowski, J Bull, L Zhang (2014). Racial/ethnic differences in drug disposition and response: Review of recently approved drugs. Clinical Pharmacology & Therapeutics, doi: https://doi.org/10.1002/cpt.61