Patient burden should join standard operational metrics like cost, timelines, and regulatory compliance to ensure long-term clinical trial success, argues Christine Von Raesfeld, patient advocate with the Light Collective.
Von Raesfeld argued for greater consideration of patient experience in supply chain planning at the 2025 Clinical Trial Supply West Coast conference on 10 September in Burlingame, California. She stated that involving patient perspective earlier in clinical trial planning is instrumental to fostering not only participant satisfaction, but also long-term enrolment and retention for trial sponsors.
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“The reality of trust right now is broken” in the clinical trials sector, said Von Raesfeld. “Trust is fragile; once it’s lost it’s hard to regain, especially with patient communities”. Von Raesfeld linked this lack of trust between trial participants and coordinators to supply chain planning which she says often fails to properly account for patient experience, in some cases preventing eligible patients from participating.
“A lot of patients are eligible for trials but excluded by logistics”, she said. Von Raesfeld recounted her own experience as being eligible for a clinical trial in Boston, USA, but unable to participate due to the costs of required travel. In another anecdote, she recalled a South African patient taking part in a trial whose medication shipment was delayed. Unable to receive their treatment in time, the patient was excluded from further participation in the study.
Von Raesfeld noted several recent innovations in clinical trials, including direct-to-patient shipping, hybrid or decentralised trial models, and flexible dosing regimens, as possible solutions to such roadblocks. “They aren’t luxuries. These are really tools for retention”, she said.
Von Raesfeld said early, in-depth collaboration between trial coordinators and patient advocates is key to designing trials with patients in mind from the start. “Companies that partner with advocates early and design logistics with the patients, they build credibility that lasts beyond one protocol, and the patients remember who showed up for them”, she claimed.
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By GlobalDataVon Raesfeld said these discussion should frame patient burden as a fundamental metric for trial success alongside standard metrics like cost, timelines, and regulatory compliance. She noted a report from the Rare Disease Legislative Advocates and the EveryLife Foundation for Rare Diseases which outlines the impact of patient burden in clinical trials. Von Raesfeld added, “when we reduce patient burden we don’t just improve trials; we’re improving patients’ lives”.
