“It is critical, and it is really – really- slow and steady”
The second Jawdrop Fireside panel on 25th September 2024 focussed on how to build trust in clinical trials.
Thanks to our speakers: Naima Adan, Community Engagement Officer, Patient Experience Research Centre (PERC); Luke Devey, BMBCh, Ph.D., Chief Medical Officer, Quell Tx; Pauline Hakutangwi, Novartis UK – patient engagement representative; Dr. Keerti Gedela, EDI Lead, CRN North West London and chair Dr Bob Klaber, Consultant General Paediatrician and Executive Director of Strategy, Research and Innovation, Imperial College Healthcare NHS Trust
Let’s start from the Why: diversity in clinical trials is critical because it increases the efficacy of new drugs, by both ensuring they work across the entire population and by increasing the chances that the entire population adopts them. The second point is more subtle than it appears: if a community is underrepresentation in clinical trials, they are less bought into the process and therefore have less trust in the outcome (it won’t work for me) and more likely to be sceptical about the whole health system (it doesn’t care about me). So this matters both from a clinical equality perspective, and from an adoption perspective.
Setting the Scene: Trust in clinical research must be earned and maintained through consistent, transparent, and culturally sensitive efforts. For some marginalised groups, the problem starts much earlier: how will they ever agree to participate in clinical trials if they are not even picked up by basic health services? This requires a more holistic approach.
Consistent and face to face interactions: meeting people face-to-face builds trust. Regular, in-person engagement helps establish a personal connection and shows commitment. Also, trust is built over time: consistent presence and follow-through in the community are crucial.
Transparency & Clear Communication of Intentions: Be transparent about the goals of the research and explain where the data goes and what happens with it. Then provide regular updates and feedback to the community about the progress and outcomes of the research. If someone has contributed to a clinical study, it is your duty to inform them about the result, in order to maintain trust.
Cultural Competency and Representation in medical staff: Tailor communication to the specific cultural context of the community. Naima shared an example of finding a Somali dietician to engage with the Somali community. This means ensuring that research teams include members who reflect the diversity of the community.
Make participation feasible: provide practical support such as transportation, childcare, and flexible scheduling to make it easier for people to participate in research.
Promote Health Literacy: Work on improving health literacy within the community – through tailored and culturally sensitive initiatives- to help them understand the importance of research and how it can benefit them. This long-term approach is worthwhile.
To conclude: Rome wasn’t built in a day, and neither is trust. Only through diversity in clinical trials we will be able to achieve equitable, effective, and trustworthy healthcare outcomes, however this will require a concerted effort to build trust in underrepresented communities. Trust in clinical research will need to be earned -and critically maintained – through consistent, transparent, and culturally sensitive efforts..
Written by: Cat Rigoni
