The inspirational quote ‘It takes all of us’ has reverberated through social justice and become a sporting mantra, hailing the benefit of combined effort for a greater good. Its inclusivity is at the core of transformative performances on sporting fields and step changes in attitude and approach in society.
Its value in health could be immeasurable in tackling disparities that manifest in reduced access to anything from screening and diagnostics to the latest therapies and care, and varying levels of life expectancy influenced by geography income, education, ethnicity and employment status.
Distilling ‘It takes all of us’ into policy and procedure is a Herculean task but energy and resources are now being directed towards a rich patient-centred focus on R&D, clinical trials and access that go beyond the ambition and reach of ‘patient centricity’ to open up more dynamic opportunities for collaborations and targeted care.
The challenge is huge: ethnic minorities and women are vastly under-represented in clinical trials despite healthcare provision and research showing a clear link between certain patient populations and lower health outcomes.
Innovation and effort are being channelled into righting this wrong through deeper engagement with patient groups, reformulation of regulation and pharmaceutical companies committing to increasing their reach.
“You can’t fully serve a patient community or provide access to medicines to all people when they need them, if you’re not being inclusive in your approach right the way through the pipeline and the entire product life cycle,” says Helen Laurence, Senior Vice President at Precision AQ, an agency that integrates data, evidence and market insights to widen patient access and care. “Empowering access to medicine is a high- level mission for an organisation; one that – from an ethical, scientific and economic perspective – should be built on inclusivity.
“Engaging with different types of patients in their own communities, getting insights up front and using them in study protocols is clearly going to take longer so I understand why, in the earlier stages of clinical development, pharma companies may not feel able to make that commitment.
However, this can be a false economy if companies are then required by regulators to do additional trials post-approval. With AI, there is also the opportunity to explore more cost-effective options to ensure trial materials are more suited to varied patient populations.”
Culture change
Recruitment and retention in clinical trials, with or without a diversity lens, is a complex and fractured environment and, despite good intentions around industry, it will take more than well-meaning internal memos to create change. The implications on under- served communities are alarming and, for an industry capable of searing medical innovation, applied problem-solving and scientific questing, the fact that so many people are not even considered for clinical trials is a confounding stain on its reputation.
Precision AQ, a group of experts and advisors working under the banner ‘Where Science Meets Humanity’, has a full-spectrum approach to unlocking access to life-changing medicines. Helen Laurence, its Managing Director, International Agencies, believes that culture change within organisations is needed to elevate diversity to act as a catalyst to both improve patient outcomes and underpin business performance.
“We should be thinking about the barriers people face, whether that’s socio-economic or disability related, and really approach it from the patient side as well as the clinical or scientific perspective,” she says. “We should have that thought process across the entire patient journey and be willing to factor in engagement with under represented communities as part of our planning.
“There are all sorts of challenges in this. There is distrust in authorities, the pharmaceutical industry and there is debate about how different people define diversity. But unless we look at this from a patient’s view and appreciate their lived experience, we will not be able to create change.
“Encouragingly, we’ve seen a lot more focus on this from our clients, who are building diversity and inclusion into their clinical trials and beyond, and they are thinking more about their internal structures and making sure that there’s an even playing field within their organisations – so that the people making the decisions are from a range of backgrounds. It takes time, it takes investment but it is worth it. This is not just a box-ticking exercise. It is a practical way forward with multiple benefits.”
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