Addressing Health Inequalities: The Crucial Role of Representation in Clinical Trials
By Dr Max Pemberton , Journalist, NHS doctor, and WE UK Strategic Advisory Board member, and Ben Fisher , Head of Health at WE UK
Without clinical trials, we would have no advances in medicine. They are the cornerstone of scientific understanding and progress. Great effort is taken to ensure they give accurate, reliable, and detailed information about the value and safety of a medication before it is launched and used by the general population. However, a critical challenge persists: the lack of diverse representation in these trials.
This issue isn't just a matter of equality – it's a fundamental problem that affects the quality and applicability of medical research. A lack of diversity in clinical trials has profound implications for whether we can trust how effective a medication is for the diverse groups that will come to use it. As an industry, we need to do all we can to ensure that global medical trials reflect the global population.
Misrepresentation in Clinical Trials: The Gaps and Implications
Surely scientists and researchers go to great lengths to account for all variables and confounding factors in the design of the trial? Given that medications are going to be used by the general public, surely this would mean that those participating in clinical trials represent those who would be taking the medication?
Shockingly, despite efforts to improve diversity, all too often many clinical trials still fail to adequately represent the population they aim to serve. For example, while South Asian individuals are disproportionally affected by type 2 diabetes in the UK (accounting for 11.2% of those with the disease), they represent just 5.5% of participants in clinical trials for glucose-lowering medications in type 2 diabetes.
Racial and ethnic minorities, women, the elderly, and individuals from lower socio-economic backgrounds are often underrepresented in trials. This is an urgent problem because this lack of diversity can lead to significant gaps in our understanding of how potentially life-saving treatments affect different populations.
While the need to improve representation and diversity in research is a global issue, it’s one gaining recognition in the UK by the Health Research Authority (HRA) and Medicines and Healthcare products Regulatory Agency (MHRA). A practical guide has also been developed by NHS England ?to help health researchers engage more diverse participants and to reach underrepresented groups.
Knowing that drugs can affect different people in different ways, surely those designing drug trials and recruiting for them want trials to be representative of the people who would be using the drugs in the real world? Why wouldn’t the cohorts in drug trials be representative of the cohorts using them? According to a report by a patient-advocacy charity National Voices, the main reasons for lack of representation appear to be:
The implications for patients are substantial. Medications may have varying levels of efficacy or side effects across different demographic groups, which can go undetected in trials with limited diversity. This not only puts underrepresented groups at risk but also misses opportunities for developing targeted treatments that could be more effective for specific populations. It brings into question whether a medication will work, what side effects might be experienced, and how severe they are, and even things such as the dose or regime that creates the best results.
Doctors are encouraged to practice evidence-based medicine, but without diversity in clinical trials and a breadth of participants, we cannot, in all good faith, say that we are doing so. This is because the evidence we are basing our decision to prescribe on may not be relevant to the patient sitting in front of us. Likewise, it could be argued that patients cannot make an informed decision if the evidence of efficacy that doctors provide them with isn’t relevant to their demographic.
Furthermore, the lack of representation perpetuates existing health disparities. When certain groups are consistently left out of medical research, the healthcare system inadvertently caters to a narrow demographic, potentially exacerbating health inequalities. It focuses on certain problems to the detriment of others. Priorities shift.
The role of the healthcare industry and what needs to change?
So, what is to be done? At a fundamental level, there is only one way to tackle a lack of representation: by diversifying recruitment strategies. There needs to be a concerted, proactive effort from those within the healthcare industry to act on this. Exactly how we do this is a more complex question that requires innovative thinking and communication.
One solution can involve community engagement and outreach programmes: partnering with healthcare providers serving diverse populations and leveraging technology to reach underrepresented groups. But it requires a level of determination to make this happen. The fact that these groups are underrepresented is an artifact of them often being on the margins of society, or feeling disempowered, disengaged, sceptical, or wary of the medical community, or language barriers.
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The Lord O’Shaughnessy review into commercial clinical trials in the UK highlights that there is a lack of a single source of information about clinical trials activity in the UK. This makes it even harder for healthcare professionals, patients, and the public to know what is available, and how it is relevant for them.
Too often, people hear about potential trials through word-of-mouth or closed networks. An industry-wide shift in our approach is needed, from a reliance on individuals learning about clinical trials and expressing interest of their own accord, to the implementation of effective strategies to support healthcare professionals in bringing appropriate information more systematically to patients.
We also need to enable a better distribution of research across geographies, communities, and care settings, to ensure equality of access for all patients globally. Improving study design is another critical area. This includes developing more inclusive eligibility criteria, ensuring research protocols are culturally competent, and addressing logistical barriers that may prevent certain groups from participating, such as transportation or childcare issues.
Communication strategies
It’s clear that education and awareness are key to navigating current discrepancies in approaches to clinical trials. As communicators, effective strategies are crucial in addressing this issue. Messages need to be tailored to diverse audiences, leveraging community leaders and influencers to reach different groups. It's important to address misconceptions and build trust, particularly in communities that have historically been underserved or mistreated by the healthcare system.
The key strategies would include a plan to:
By focusing on building trust through transparency, engagement, and culturally sensitive practices, healthcare organisations can help overcome the barriers to participation in clinical trials. This will go a long way toward shaping a more equitable healthcare system.
The path forward
Addressing the lack of representation in clinical trials is a critical step in combating health inequalities. This isn’t something that can be ignored. It requires a concerted effort from all stakeholders in the healthcare industry – from researchers and clinicians to policymakers and communication professionals. By ensuring that clinical trials reflect the diversity of the population they aim to serve, we can work toward a healthcare system that truly meets the needs of all patients.
The path forward requires commitment, innovation, and a willingness to challenge the status quo, but the potential benefits in terms of improved health outcomes and reduced disparities make it a goal worth pursuing.
At WE Communications, we work at the intersection of health and technology, helping to shift perceptions and drive audiences to action. Our new Strategic Advisory Board strengthens these efforts, providing external insights and advisory support to WE UK’s clients who are navigating a complex and fast-moving business environment.
To find out how WE UK and its Strategic Advisory Board can help meet your communications goals, email: [email protected]
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