# Paid community advisory boards with power to change protocol burden

Source: https://onco.cc/ideas/idea-tr1-paid-community-advisory-boards/  
OnCo record `idea-tr1-paid-community-advisory-boards` (Idea). Data CC BY-NC 4.0, attribute "Data from OnCo (onco.cc)"; commercial use needs a licence.

## TL;DR

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.

## Summary

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.

## Fields

- Kind: Idea
- Last checked: 2026-09-08
- Hypothesis: Protocols reviewed by empowered community boards will have fewer research-only procedures, more flexible visit windows and higher enrolment and retention of the target groups than unreviewed protocols.
- Rationale: HIV trial networks with community advisory boards achieved higher minority participation than oncology; burden is a leading reason for refusal, and those affected can identify it early.
- Proposed test: Within one sponsor, assign half of new protocols to board review; compare procedure counts, enrolment demographics and retention.
- Maturity: early-clinical
- Actor: industry

## Sources

- Bottleneck evidence (Trials do not represent the people who get cancer): Loree et al., Disparity of race reporting and representation in trials leading to cancer drug approvals (JAMA Oncology 2019): https://doi.org/10.1001/jamaoncol.2019.1870

## Connected records

- institutions: [National Cancer Institute (NIH)](https://onco.cc/institutions/nci/)
- bottlenecks: [Patients lack understanding, navigation and agency](https://onco.cc/bottlenecks/b-patient-voice/), [Trials do not represent the people who get cancer](https://onco.cc/bottlenecks/b-trial-diversity/)
- key papers: [Disparity of Race Reporting and Representation in Clinical Trials Leading to Cancer Drug Approvals From 2008 to 2018](https://onco.cc/key-papers/paper-loree-jama-oncol/)

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