Disease and Illness Do Not Discriminate: Diversity in Clinical Trials

October 06, 2022
Spotlight on Leadership: Dr Suki Balendra

Guest Post from Dr Suki Balendra, Life Sciences Lead, Imperial College Healthcare NHS Trust

Patient diversity in clinical trials has long been a topic of discussion within the research community. Disease and illness of course do not discriminate, but our age, race and ethnicity do play a part in determining how conditions affect us. The lack of diversity in trials is a real obstacle to understanding the safety and efficacy of novel therapies across different populations which is vital to advancing equity.

There been a real movement for change in terms of diversity and equality. Black Lives Matter protests fueled conversations around discrimination and diversity both within the workplace and at home. More diversification and better representation of those from traditionally marginalized communities is not now a ‘nice-to-have’ but an absolute must.

The COVID-19 pandemic really shone a spotlight on the necessity for clinical trials like we had never seen before. The regular reporting in the media about the COVID-19 vaccine trials raised awareness in communities all over the world about the drug development process. In the research community we must harness the opportunity we have been presented with now, where awareness about research in the general population is so high.

Barriers to clinical trial diversity – such as trial availability, access, eligibility and mistrust – present real challenges. Clinical hesitancy is also a factor. I have experienced first-hand, clinical trial opportunities not offered to all patients equally. Perhaps the path of perceived least resistance is attractive. All these barriers can be overcome. There will not be one overarching solution to this challenge but many which will require sustained effort over many years.

Many in the NHS, academia, community-serving organizations, and the Life Sciences industry struggle to establish long lasting meaningful partnerships. The North West London Clinical Trials Alliance has sought to change that paradigm. We have established a regional collaborative working model in partnership with the Life Sciences Industry. Engagement and collaborative working between stakeholders including community, NHS and pharmaceutical industry partners enables trust and gives an ecosystem to co-create strategies and solutions together. Leveraging partnerships between NHS, community, and industry now presents a tremendous opportunity to cultivate and sustain clinical trial diversity.

The partners in the alliance are Imperial College Healthcare NHS Trust, Chelsea and Westminster Hospital NHS Foundation Trust, London North West University Healthcare NHS Trust (LNWH), Central London Community Healthcare (CLCH) primary care and the NIHR clinical research network. The alliance that was born out of necessity in the pandemic, is a great opportunity for us to bottle the formula we developed to tackle COVID and apply it to all other disease areas.

North West London is one of the most diverse and vibrant areas of our capital. With a population of 2.4 million people just under half of that population comes from a diverse background. We are about to embark on a clinical trial in sickle cell disease across two sites in the alliance. In North West London we have a disproportionately high number of patients suffering with sickle cell disease.

There have been only three main treatment options in the NHS for sickle cell disease in the last 50 years. This is a shocking statistic. Clinical Trials are vital to give patients suffering with sickle cell a wider choice of safe and effective treatments

The sickle cell study we have secured is an example of the clinical trial opportunities we have created through the alliance and the close working relationship we have with the Life Sciences Industry. Most importantly the alliance is giving patients the opportunity to take part in trials and these trials are relevant to the population of North West London. There is so much more to do but in North West London we are certainly taking steps in the right direction.

Suki Balendra’s career has spanned academia, industry, central government and currently the UK’s NHS; working with the pharmaceutical Industry. She is working at Imperial College Healthcare NHS Trust as part of National Institute for Health Research (NIHR) Clinical Research Network (CRN), Suki’s role is focused on growing the commercial research opportunities for North West London. Suki provides a key perspective about how the Clinical Research landscape.

More Articles from IAOCR

How to Conduct a Mid-Year Self-Review

How to Conduct a Mid-Year Self-Review

Guest Post from Sylvia Wambui – Black Women in Clinical Research A mid-year review is a chance to step back and take notes of the hits, misses, and learning from the past 6 months and plan how many milestones you need to take in front of you. A review will not only...

read more
The Evolution and Continued Success of TMF University

The Evolution and Continued Success of TMF University

LMK recognized a void in the area of educational excellence and regulatory knowledge surrounding the management of the TMF in the clinical trial space. While there are many webinars and conferences related to TMF, most provide only foundational knowledge and do not...

read more