Does a lack of diversity in clinical trials reflect a lack of diversity among researchers?
Embedding diversity into clinical research does not start and end at trial recruitment – the community needs processes and institutions that reflect society and provide representation.
Greater representation among study designers, research teams, and funding committees would lead to greater diversity among research participants and help to tackle health inequalities.
Speakers at the virtual National Institute for Health Research (NIHR) Academy Members’ Conference said the inclusivity conversation had moved from “why” to “how”, and that it was time to look at wider structures.
Professor Sandra Eldridge, equality, diversity, and inclusion lead for Bart’s and the London School of Medicine and Dentistry, said: “I would suggest that the reasons our trials are not as inclusive as researchers would like are related to wider societal issues.
“Clinical trials are part of research, and research is part of society. While we may be able to improve things through trial design, we certainly can’t solve all the issues just by doing that.”
The barriers are multiple, she went on, citing a lack of trust in experts, institutions, and authority among some groups, which can be seen in current concerns over COVID-19 vaccines, and in the research process as a whole.
“The literature shows that people who feel this lack of trust acutely use words like ‘discrimination’, ‘deception’, and ‘exploitation’. They also talk about the idea of researchers being parachuted in to do research, without really involving or getting to know the group,” said Prof Eldridge, adding that there were a number of reasons for this mistrust.
“The first is historic racism in research, such as the infamous Tuskegee experiments, and the racism that people experience within the health service and wider society.
“Also, I think there is a lack of knowledge about research processes and safeguards among the general population and, coupled with that, a suspicion of large rich organisations such as drug companies.” Importantly, she went on, there is a “lack of visible role models within established research”.
Equality versus equity
Representation among research teams and funding committees is crucial to building processes, institutions, and interventions that work for the whole of society.
Achieving this means actively seeking out people in previously marginalised groups and making sure their voices are heard, said Professor Lucy Chappell, NIHR research professor in obstetrics at King’s College London.
Prof Chappell said: “We talk a lot about equality and that’s important. But perhaps even more important is equity – how are we genuinely ensuring everyone has an equitable opportunity to apply for research, lead research, and be on decision making bodies?
“If we put out adverts for funding committee members, for example, and are surprised when we don’t get a balanced representation of applicants, we need to ask ourselves what we are doing within that process that systematically prevents or discourages certain groups from applying.”
Gender and ethnicity are not the only considerations, she went on, adding that cognitive diversity, or the meeting of multiple – even conflicting – representative perspectives, was also crucially important.
“If I have a lot of intelligent people together in a room but they all have the same view, I’m not going to get diversity. It’s not about having clones or a tick box exercise, it’s about having diversity in the way people approach problems.”
In the same vein, research institutions should be looking for passion, ahead of the usual accomplishments and awards in their staff, said Prof Jill Manthorpe, director of the NIHR Health and Social Care Workforce Research Unit.
“Passion is the prod that makes people say: ‘but what about patient views, what about the views of the people we’re not hearing?’ Passion enables people, and spurs them to go the extra mile,” she said, using examples of community work and volunteering.
“It’s about long-term relationships, not just parachuting in for a project. It’s about what we as researchers can bring to communities, and how enriching that is for us over the years.”
Policies and tools to help organisations build ethnic diversity into processes, such as Trial Forge’s INCLUDE Ethnicity Framework, have been launched in recent years. What is less easy to pin down, though, is socioeconomic background, said Prof Manthorpe.
She pointed to the “7% problem”, referring to the 7% of people attending fee-paying schools who also hold most of the UK’s top jobs.
“How do we find and encourage people who didn’t have those educational opportunities? How do we differentiate between people who have had a very privileged education, from those who haven’t had the ability to build up robust networks early on in life?”
Older methods of establishing background, such as the age at which someone left school or whether they had an outdoor toilet growing up, are increasingly outdated and irrelevant, she said.
“We don’t know the answer as to how do you work out people’s socioeconomic status in a respectful and easily accomplished way.
“But I hope that we will get more people engaging with this, helping to answer some of those questions on how we reach people who are perhaps the hardest to hear,” she said, adding that all researchers wanted to “extend the ladder” to those who follow them.
There is lots of discussion about making research more diverse, and various initiatives have sought to alleviate the problem that can lead to devastating health inequalities in recent years.
But by making processes and infrastructure more inclusive, researchers will no longer need to worry about reaching underserved communities to make sure their interests are represented – because they will be part of them.
About the author
Amanda Barrell is a health and medical education journalist, editor and copywriter. She has worked on projects for pharma, charities and agencies, and has written extensively for patients, healthcare professionals and the general public.