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Before a trial is funded, patients who have had the disease sign off on how many visits, scans and blood draws it demands, and on whether the endpoints measure things that matter to them.
Trial protocols are written by sponsors and statisticians; visit burden, exclusion criteria and endpoints reflect regulatory habit rather than what participants can tolerate or value. Funders (public and charitable) would require a structured patient review of burden, eligibility and endpoints, with a published response to each recommendation, before release of funds. PCORI and some UK funders already require patient involvement; this makes it a gate with teeth and a measurable output.
Shares Patients lack understanding, navigation and agency, Trial design, endpoints and cost.
Shares Patients lack understanding, navigation and agency, Trial design, endpoints and cost.
Shares Patients lack understanding, navigation and agency, Trial design, endpoints and cost.
Shares Patients lack understanding, navigation and agency, Trial design, endpoints and cost.
Shares Patients lack understanding, navigation and agency, Trial design, endpoints and cost.
Shares Patients lack understanding, navigation and agency, Trial design, endpoints and cost.
Shares Patients lack understanding, navigation and agency, Trial design, endpoints and cost.
Shares Patients lack understanding, navigation and agency, Trial design, endpoints and cost.