Paid community advisory boards with power to change protocol burden
Before a trial is finalised, a paid panel of patients and community members from the groups the trial needs would review it and could require changes to visit schedules, procedures and materials that would deter people like them.
Sponsors convene standing, compensated community advisory boards representative of the target population for each disease programme; boards review protocols for burden (visits, biopsies, travel, language), consent materials and recruitment plans, and their recommendations must be adopted or publicly answered. Precedent from HIV research networks, where community boards are structural.
- Trials do not represent the people who get cancer · Older, Black, Hispanic, Asian, rural, poor and multimorbid patients are under-represented, so results may not apply to them.
- Patients lack understanding, navigation and agency · Most patients cannot understand their options, find trials, or push back, so decisions are made for them.
Pages like this
not linked directly; found by shared links- IdeaA health-literacy certification standard for oncology portals, letters and apps
Shares Patients lack understanding, navigation and agency, Trials do not represent the people who get cancer.
- IdeaCommunity health workers and trusted local organisations paid to recruit for trials
Shares Trials do not represent the people who get cancer, National Cancer Institute (NIH).
- IdeaAt least a third of pivotal-trial sites in community and rural settings
Shares Trials do not represent the people who get cancer, National Cancer Institute (NIH).
- IdeaRemove blanket exclusions for mental illness and dementia; support consent instead
Shares Trials do not represent the people who get cancer, National Cancer Institute (NIH).
- IdeaMobile research units bring trial visits to rural towns
Shares Trials do not represent the people who get cancer, National Cancer Institute (NIH).
- IdeaDiversity action plans with consequences: unmet targets trigger post-approval requirements
Shares Trials do not represent the people who get cancer, National Cancer Institute (NIH).
- IdeaA public equity index for trial sites and sponsors, tied to funding
Shares Trials do not represent the people who get cancer, National Cancer Institute (NIH).
- PersonAudre Lorde
Shares Patients lack understanding, navigation and agency, Trials do not represent the people who get cancer.