Chapter 14: Be part of the community, not a website¶

In this chapter you will learn to:

Explain why trust is earned community by community, before the study.
Bring the community into everything the organization does.
Answer a question about patient-centeredness with something recent.

Case study: Arriving as an Outsider¶

Charlie has one of the most severe forms of rare epilepsy, and I have been part of the rare epilepsy community for many years. When I begin work with a different rare epilepsy community, I still have to earn trust, and in many of the monogenic communities, where families know one another well, I still arrive as an outsider. If that is true for me, it is more true for a research team or a vendor arriving from a large, well-funded area such as oncology, diabetes, or chronic obstructive pulmonary disease (COPD), with a strong reputation there and an approach built for it. A close-knit rare disease community is not a market to be approached with detached objectivity. Its members are trusting the people who study their children with the hope of a cure.

Engagement has to come before the study is planned, and it improves the study. Time spent with people living with ALS shows how hard it is for them simply to take part in research, which makes the case for decentralized participation; the same is true in rare epilepsy. Families can show how a disease progresses in ways that change which questions to ask, how granular to make them, and which instruments to try, and they often know the research landscape better than anyone. Many readers of this book are already community leaders, and the habit still applies to them: belonging is maintained, not assumed, and it shows up later as retention.

The organizations whose studies recruit and retain well bring the community into everything, not only the registry. An academic center invites community members to its meetings, fundraisers, and galas, asks them to speak, cross-promotes their events, puts them on its social media calendar, and shares their news. The community is used to seeing the team's faces, so when a study is announced it does not feel like a request from strangers. Gratitude runs through the whole organization, toward everyone in the community, whether or not they enroll.

I see the opposite again and again when a grant with a patient-centered focus comes due: teams scramble to show any interaction with the patient community at all. That should never be a scramble. A team should be able to point to something that happened recently, and to know what the community wants, because that knowledge makes the study better, not because it makes the application look good.

A coffee shop that hangs local artists' work and sponsors the school fundraiser is part of the neighborhood before anyone orders a drink.

Lessons for registry leaders¶

Trust in a rare disease community is earned community by community, even by people who belong to a neighboring one. Engagement that starts before the study, runs through the whole organization, and gives as much as it asks makes the study better and makes recruitment and retention possible.

The rules¶

Earn trust before you plan the study, community by community. A track record in another disease area, or in a neighboring rare disease community, does not transfer automatically.
Engage people living with the condition while you design the study. They show you the barriers to participating (and the case for decentralized participation), how the disease progresses, how granular the questions need to be, which instruments to try, and who else is doing research.
Show up in person: family conferences, clinic days, community meetings. The registry is represented by a person families have met.
Bring the community into everything the organization does: meetings, fundraisers, galas, speaking invitations, cross-promotion, and the social media calendar.
Hold regular office hours where anyone can ask what the registry is doing with their data.
Report back on a schedule, in plain language, including what the data have not yet been able to answer.
Involve families in decisions about what to collect and what is too burdensome.
Be grateful to the whole community, whether or not people enroll, and amplify their voices and their events.
Keep engagement continuous enough that any question about patient-centeredness, from a funder or a reviewer, can be answered with something recent.
Treat the community as the reason the registry exists, not as its recruitment pool.
Expect this to take time every month, and budget for it as you would for software.

What AI can do, and what only a person can do¶

What AI can do¶

Draft the plain-language update, cross-promotional posts, and translated materials for review; summarize questions from office hours.

What only a person can do¶

Be in the room; earn trust in a community that is not yet yours; be grateful in a way people believe.

Take-home¶

Trust is earned community by community before the study begins, and an organization that is part of the community all year has participants when it needs them.

Practice¶

Exercise¶

In the community engagement record, list every interaction your organization or team has had with the community over recent months: events attended, office hours, speaking invitations, cross-promotion, newsletters, and conversations. Then answer: if a funder asked how the community shaped your study, what recent interaction could you point to, and what did it change?

Check your work

If the list is short, or every item is a request for something, that is the finding. A strong record shows interactions in both directions, some unrelated to recruitment, and at least one that changed a decision about the study.

Your workbook page¶

The Community engagement record page of the Slow Registry Workbook applies this chapter to your own registry. Fill it in online or print it and work by hand. The AI prompt library has a prompt for this chapter's topic, paired with the step only a person can do.

Check your understanding¶

A team with a strong record in oncology plans a registry for a rare epilepsy community. What should it do first?

Earn trust in that community before planning the study, and involve people living with the condition in the design. A track record elsewhere does not transfer automatically.

What should a team be able to show when a grant asks about patient-centeredness?

A recent interaction with the community and what it changed, drawn from engagement that runs all year rather than assembled for the application.

Up next: The second community a registry depends on is the researchers who will one day ask for the data. Continue to Chapter 15.