{"entity":{"id":"idea-moon-patient-designed-trials","kind":"idea","name":"Patient panels approve trial burden and endpoints as a condition of funding","aka":[],"tldr":"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.","summary":"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.","asOf":"2026-09-08","links":[{"label":"PCORI","url":"https://www.pcori.org/"}],"tags":[],"related":[],"cancers":[],"sections":[],"technologies":[],"targets":[],"drugs":[],"companies":[],"institutions":[],"pathways":[],"terms":[],"trials":[],"people":[],"bottlenecks":["b-patient-voice","b-trial-design"],"keyPapers":[],"journals":[],"dependsOn":[],"notes":[],"hypothesis":"Patient-gated protocols recruit faster and retain more participants (dropout down by a quarter) and include at least one patient-prioritised endpoint in over 80% of cases.","rationale":"Feasibility failures are the commonest reason trials close early. Patients are the best judges of what they will actually do for two years.","test":"Funder adopts the gate for half of its calls at random; compare accrual rate, dropout and endpoint composition between gated and ungated trials over three years.","maturity":"early-clinical","actor":"philanthropy","cost":"small","horizonYears":3},"route":"/ideas/idea-moon-patient-designed-trials/","neighbours":{"bottleneck":[{"id":"b-patient-voice","kind":"bottleneck","name":"Patients lack understanding, navigation and agency","route":"/bottlenecks/b-patient-voice/"},{"id":"b-trial-design","kind":"bottleneck","name":"Trial design, endpoints and cost","route":"/bottlenecks/b-trial-design/"}]}}