The future of patient diversity in UK research
Since our event last November about how the life sciences sector in the UK can achieve greater patient diversity in research, we have been working hard on a plan to achieve real change.
As three patient engagement organisations, we – Innovative Trials, COUCH Health and Egality – passionately believe the UK should be a leading force in addressing the issue of patient diversity in research, to ensure treatments will be safer and more effective for everyone. We recognise diverse representation has - and continues to be - a long-held challenge for the industry and that there is no ‘quick fix’ to the issue. But we also know that change begins with small steps and that together, we can help drive positive change.
This is why we are forming a National Taskforce, which will include representatives from across the research and pharma arenas. We will work together to investigate the critical and chronic issue within UK health research of the under-reporting of ethnicity. We know that without this data there is no benchmark to measure treatment efficacy in Black, Asian and minority ethnic groups or improvements in the recording of this information.
For the first time, we’ll be calling with one voice for political action and identifying where policy changes might be needed. It’s an important step forward.
In the meantime, the members of the expert panel from our November event have shared their predictions for what the future might hold for diverse patient representation in UK research and clinical trials..
Our predictions for patient diversity in research in the year ahead
Five experts joined the panel of our Road to Equality webinar. They were:
CEO of Innovative Trials, who chaired the event
CEO of COUCH Health and the Demand Diversity campaign
Chi Onwurah MP
Shadow Minister for Digital, Science & Technology
Chief Officer for the Caribbean and African Health Network
Head of Sales - Biopharma for Source Bioscience and Co-founder of Inclusive Health Research
Annette Jack, founder of Egality, opened the event. She predicts:
"2021 should be the year for collaborative working to address diversity in health research and trials. One of the first challenges is ensuring we can record and report ethnicity data ethically and effectively, so we can understand the UK landscape and benchmark improvement. This will require input from all stakeholders, including those representing the people and communities who may be hesitant about sharing this information."
Kate Shaw says it’s vital for the industry to continue building on the progress achieved in this area from COVID-19 vaccine trials in 2020:
"Achieving greater diversity of patient populations in trials has been a long-running challenge, but Pfizer, Moderna and AstraZeneca’s COVID-19 vaccine trial programmes last year showed us that it is possible. We must all now follow them down the path they have started walking, in 2021 and beyond. Greater patient diversity is a ‘must’ in clinical research, not a ‘nice to have’. It’s imperative that we all work together and take an integrated approach to tackle this inequality."
Charles Kwaku-Odoi shares his thoughts:
"Ensuring everyone has access to clinical trials, it’s an ethical and a moral thing we have to do. I think the benchmarking against the majority population has to end because one size doesn’t fit all. Why is it that in 2020 in the UK, a black woman is five times more likely to die during childbirth? We still haven’t seen any form of targeted intervention to explore why."
Josiane Chuisseu believes a key thing that needs to change is data collection, something we hope to influence during 2021 and beyond with the National Taskforce:
"Diversity, for me, is all about data. The fact is that it is painful, very painful at this point in time, to get the right sort of data and that’s because diversity was not taken into account."
"We need to really understand and really grasp what we are facing and that can only be answered by providing the right sort of data. Data means informed decision. Informed decision means action, and action means meaningful, powerful and long-term change."
Meanwhile, Ash Rishi, says:
"The diversity in clinical trials narrative is undoubtedly developing. And with that, many companies are working on innovative solutions that can improve diverse representation."
"I think in 2021, we will enter a testing phase and start to generate the proof that some of these solutions will make a positive impact on diversity. I hope this evidence will start to have a role in dispelling myths, for instance, will decentralised trials really improve diverse representation?"
And Chi Onwurah MP would like to see the profile of clinical trials and research raised through the media and within Westminster to secure government action. She says it should be part of our response to COVID-19.
"We shouldn’t ‘build back better’ from COVID-19 and still have the same fault lines in our research."
As we develop our plans for 2021 and the National Taskforce, don’t forget to sign up to our mailing list for updates on our campaign.