Attempts at reform have not gone far enough. The problem isn’t the documents—it’s how to frame consent in the new health ecosystem.
Rather than just proving short-term retention, interactive consent forms can be set up to spark long-term patient learning. Maybe a consent form comes with a field guide to data privacy, or explains past examples of decisions the community has made about data. Or maybe it empowers patients to practice making decisions about data themselves, or to predict how a community would respond to a hypothetical governance scenario.
As the line blurs between community-building and research initiatives, as peer support groups move online or are built into research platforms, consent processes will also need to account for people who don’t contribute data but who nonetheless participate in the community, whether via support groups,, or even just as a family member of an involved patient. This may mean building better bridges to the communities and patient groups who are affected by, but independent of, a research project.
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