One hand doesn’t know what the other is doing: Finding clinical trials designed WITH patients

When I asked leading patient advocates around the world and their allies whether patients should be able to find clinical trials designed WITH them, they gave a resounding ‘YES!’

• “Patients should be able to look at any clinical trial registry and immediately understand which studies were shaped by patient involvement. Making this visible is not just a matter of transparency—it’s a matter of respect and equity. When patients’ voices are part of trial design, outcomes become more meaningful, and participation becomes more accessible.” — Dr Amy Price: Patient Advocate; Editor-in-Chief (Journal of Participatory Medicine)
• “When a clinical trial acknowledges the voices, priorities, and realities of the people it hopes to serve, everything improves, from trust to understanding and ultimately participation. A simple field or filter that highlights patient involvement in trial design would give people genuine agency in their search for options. It would also signal, in a very practical way, that their experience matters.” — Keith Berelowtiz: Ethics Committee Chair; Founder, trialport and pRxEngage
• “From a perspective of an early phase clinical trials investigator in solid tumours, I believe there is a greater need for patient/consumer engagement and consultation in clinical trial design and protocol development… having filters to retrieve trials designed with patient involvement would be critical.” — A/Professor Jia Jenny Liu: Medical Oncologist; Clinical Trials Investigator
• “Documenting patient involvement in the design of cancer trials enhances the process by ensuring that safety, operational efficiency, and efficacy are considered from a multi-stakeholder perspective. Public reporting of engagement practices will incentivise sponsors to adopt a more collaborative approach to trial design, reinforcing the critical role of patient partnerships in trial optimisation.” — Dr Frank Lin: Medical Oncologist; Deputy Editor (JCO Clinical Cancer Informatics)

One path forward is through existing clinical trial registry systems. The World Health Organization International Clinical Trials Registry Platform has kindly reviewed our family’s publication and may consider whether patient involvement could be included as an optional registry data field. The complexities of change in large organisations are not to be under-estimated, but there is reason here for cautious hope. Hope, coupled with advocacy, can be powerful.

Other options include piloting a patient involvement filter and a plain-language field describing how patients contributed to trial design. This could be done in an existing registry and results of the pilot study could be published. A successful case study could also expedite change.

As someone interested in clinical trials, I hope you can share this blog, as well as our family’s publication and podcast, with others in your network.

Raising awareness of the gap in clinical trial registries is a key first step. As word spreads, a ‘coalition of the willing’ might form to help take this patient-first initiative forward. All hands on deck, as it were!