Privacy first: a checklist before you open a health group

Every health group I've helped set up has taught me the same lesson: privacy decisions are much easier to make before the first member joins than after the hundredth. Once people have shared their stories, changing who can see them feels like a betrayal, even when it's done for good reasons.

Here's the checklist I now go through with anyone starting a group here in Digital Health Communities.

Before you open the doors

• Decide whether the group is public, closed or secret, and write down why.
• Check what non-members can see: the member list, post previews, the group description.
• Allow display names. Nobody should need their legal name to talk about their health.
• Write two or three joining questions that help you spot spammers without asking anyone for a diagnosis.
• Keep posts out of search engines if your platform lets you.

Before the first difficult post

• Agree who can see reports and who can remove content.
• Pin a short note on what to do in a crisis, including where to find local emergency services.
• Ask members not to share screenshots of the group elsewhere.
• Decide what happens to the posts of members who leave.
• Tell people plainly that moderators are volunteers, not their care team.

None of this is glamorous, and it won't be what members remember about your group. But it's the foundation that lets them be honest. If you run a health space and would add something to the list, I'd like to hear it.