# Trained moderators with evidence tools in online patient communities

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

## TL;DR

Online patient groups are where much cancer advice is exchanged. Fund and train moderators, with quick access to reliable evidence, to keep those spaces accurate and kind.

## Summary

Facebook groups, forums and messaging groups are primary information sources for many patients and are where unproven therapies spread peer to peer. The proposal is a programme funding patient organisations to train volunteer moderators in evidence appraisal and compassionate correction, provide them with a rapid clinician back-channel and a curated evidence library, and measure the prevalence of unproven claims in moderated versus unmoderated groups.

## Fields

- Kind: Idea
- Last checked: 2026-09-08
- Hypothesis: Trained moderation reduces the prevalence and persistence of unproven therapy claims in participating communities by half without reducing engagement.
- Rationale: Peers are trusted; equipping them beats external correction. Online communities in other health areas have shown moderation shifts norms.
- Proposed test: Randomise willing communities to the programme or waitlist; content analysis of claims and engagement over six months.
- Maturity: early-clinical
- Actor: philanthropy

## Sources

- Bottleneck evidence (Misinformation and unproven therapies): Johnson et al., Cancer misinformation and harmful information on Facebook and other social media (JNCI 2022): https://doi.org/10.1093/jnci/djab141

## Connected records

- bottlenecks: [Misinformation and unproven therapies](https://onco.cc/bottlenecks/b-misinformation/), [Patients lack understanding, navigation and agency](https://onco.cc/bottlenecks/b-patient-voice/)
- key papers: [Cancer Misinformation and Harmful Information on Facebook and Other Social Media: A Brief Report](https://onco.cc/key-papers/paper-johnson-j-natl-cancer-inst/)

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