Working together to achieve greater diversity in UK research
In November, we – Innovative Trials, COUCH Health and Egality – brought together representatives from Parliament, the pharmaceutical sector and other national bodies to discuss how the industry can achieve greater diversity in research.
As three patient engagement organisations, we recognise that research does not always reflect all patient populations. It has been a challenge for the pharma industry for many years, but this year particularly has shown why this must be addressed.
By uniting on this issue, we want to drive forward real change.
Our panel included:
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
Diversity in clinical trials
It’s no secret that clinical research, and other types of health research, predominantly involve white participants. In 2019, more than 46,000 people took part in clinical trials in the US that resulted in 48 novel drugs being approved by the FDA. Of these, 18% were Hispanic (18%), 9% were African American and 9% were Asian.
Diversity in research, particularly clinical trials, has been a long-standing challenge for the medical research sector. Reaching and engaging with people from Black, Asian and minority ethnic communities about trials may not always be as easy as it might be with those who are Caucasian. The reasons for this can be complex, but includes issues such as cultural barriers and lack of knowledge of clinical trials, and it takes more time to build relationships and trust.
In the US, the FDA is placing increasing pressure on pharma companies to run trials with patients who better resemble the overall population. And more generally, drug licensing and regulatory bodies are increasingly asking for evidence of drug safety and efficacy in diverse populations.
However, here in the UK, there is currently no national diversity guidance for pharma companies or Clinical Research Organisations (CROs) when it comes to patient recruitment for clinical research.
Why diversity in research matters
We know that a lack of diversity 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.
And the COVID-19 pandemic has exposed the need for effective medical research that meets the needs of those most affected. Despite the virus posing a greater risk to ethnic communities, it was reported earlier this year that only six of 1,518 COVID-19 clinical trials registered on ClinicalTrials.gov were collecting data on ethnicity.
In the current climate in the UK, more than ever, there is an urgent need to tackle systemic inequalities and under-representation of cultures, races, nationalities across all segments of industry, and society as a whole.
Should diverse representation in UK clinical trials be mandatory?
Annette Jack, founder of Egality, opened our event, Road to Equality, with a welcome to everyone who had tuned in to watch our webinar – more than 100 people in total! It was great to see such interest in this topic and how engaged our viewers were, submitting questions to the panel ahead of the event.
The main question put to the panel was whether a national policy should be introduced to make greater representation of Black, Asian and minority ethnic people in research compulsory.
Chi Onwurah MP started proceedings by saying:
"It's about putting in place principles, processes, resources, monitoring and enforcement to have a research and testing infrastructure that reflects the diversity of the country."
Everyone on the panel was unanimous in the ambition to improve health equity in the UK by breaking down barriers to participation in clinical trials for ethnic minority communities.
"It's for the common good of the country and the people we serve. It will mean better outcomes. Maybe we need to take stock of where we are as a country."
– Charles Kwaku-Odoi
Kate Shaw highlighted the Pfizer and BioNTech COVID-19 vaccine trial, in which nearly half of all global participants in the Phase III trial have racially or ethnically diverse backgrounds, as an example that diversity is achievable and urged those watching our webinar to think about how we can achieve this for all trials in the future.
A major issue the panel discussed was the current lack of data about diversity, particularly in reporting ethnicity as part of trials. Few trials record this information and funders don’t necessarily ask for this to be a part of research. Josiane Chuisseu made the point that informed decisions cannot be made if the data isn’t available.
Chi Onwurah suggested introducing diversity audits and Ash Rishi talked about “stripping clinical trials back to basics” and setting diversity benchmarks for each disease area.
It was widely acknowledged that efforts to address the current ‘diversity gap’ in research could not be achieved by one person or one organisation alone. It has to be a group effort and should reach further than just health institutions like NICE, the MHRA or NIHR.
‘It’s the start of a long journey and each and every one of us is going to be needed.”
– Josiane Chuisseu
During our webinar, the panel moved onto discussing best practice for engaging with communities and encouraging them to participate in research.
Tactics commonly used for clinical trial patient recruitment, like social media advertising, aren’t as effective for people with racially or ethnically diverse backgrounds. In many cases, people’s communities and community groups play a much bigger role.
“The engagement model in clinical trials is evolving...we now need to involve community groups and give them a seat at the table."
– Ash Rishi
Connecting directly with communities on the ground, through local groups and physicians, takes more time than other traditional recruitment methods. A relationship needs to be cultivated so that trust blossoms, but investing this time and energy into people will pay dividends. Charles spoke about the role that organisations like his can have to help foster these relationships.
The panel discussed the possible concern by pharma companies that costs could increase as a result of putting in place extra measure to achieve greater patient diversity in research. But Josiane urged companies to think about how much money the NHS would save if treatments and cures could work well for everyone.
We’re extremely grateful to everyone who attended our webinar, including all the panellists who shared fascinating insights and ideas. Our Road to Equality webinar is still currently available to watch (or re-watch).
We’re now planning the next stage of our campaign and will be building a national Taskforce to drive forward change in this area. Sign up to our mailing list for updates on our campaign.