Chapter 13: Stay in touch on a schedule¶

In this chapter you will learn to:

Explain why many people take part in observational research, and what keeps them.
Build an outreach calendar that gives back as much as it asks.
Offer ways to participate that fit the hours and abilities of the people being asked.

Case study: Why a Family Stays¶

This case study draws on many studies and on my own family's experience. I participate in research for Charlie. He has had a very severe course. A clinical trial that might reduce his seizures would be our priority if he were eligible, because he might benefit directly. Observational research is different: I do not expect a registry to change Charlie's life soon, and some of what his condition has done is not something any trial I know of could undo. I take part because I hope the research will change things for other families, and because it gives what we have been through meaning. It gives me hope, and it helps with grief. Many people in the ALS community stay involved for the same reason after losing someone; it is how they process the loss and how they make their loved one's life count.

Registries ask a great deal of people like me: time and effort for a study that may not benefit our own child, linked health records, private thoughts and feelings, repeated logins, and an interface the study team knows well because they designed it, while we are learning it. For a caregiver, or for a person living with a chronic or hard-to-manage condition, rare or not, that is a lot to ask.

In the early years after Charlie's diagnosis, anyone who seemed willing to listen was a godsend. I would find a reason to tell our story to any nurse who asked me a question, because I was overwhelmed with sadness, grief, and confusion and reaching for anyone who could help. If a study coordinator had offered to be a sounding board then, I would have taken it, and I would have stayed in that study. A coordinator is not a clinician or a social worker and should not act as one, but a person who says "please reach out to me, I mean it" and then answers is the retention practice I have seen work best.

The relationship runs both ways. In a small study with 30 to 50 active participants, a participant might ask about a clinical trial they heard was running at your center. A good coordinator says: I cannot answer that, but I will find out and put you in touch with someone who can. A participant asks that question only of someone they know, and the answer is something the study gives back.

Timing and format decide who can take part. If I can complete a survey at five in the morning, after Charlie has had a seizure and things have settled but I am wide awake, I will do it. A call scheduled at noon may be impossible, because I cannot predict how the day will go or whether I can look away from him. Many people find it easier to talk than to sit at a computer, and some speak with eye gaze or another communication tool. Offering a semi-structured interview, in which a coordinator hears the person's story and codes the survey answers from it, reaches people a click-through survey does not. Full narratives can be analyzed with qualitative methods, many of which involve no AI and all of which need a human reader; Ten Habits of Great Data Analysts covers those methods in more depth.

A coffee shop's regulars come back because someone knows their order and asks about their week. A registry's participants come back for the same reason.

Lessons for registry leaders¶

People in rare disease communities often take part in observational research for others and for meaning, not for direct benefit. A registry keeps them by honoring that: a person to contact who answers, something given back, thanks that are specific, and ways to participate that fit the hours and abilities of the people being asked.

The rules¶

Give every participant a human point of contact: a coordinator who is present throughout, not only at scheduled contacts, and who says plainly, please reach out to me.
Give back. When a participant asks about something you cannot answer, such as another trial at your center, find out and connect them with someone who can.
Put outreach on a calendar: follow-up reminders, participant newsletters, office hours, and annual contact checks.
Report results back in plain language on a schedule, in the participant newsletter and in the organization's general newsletter, and mark milestones with thanks: what reaching 500 participants has made possible.
Thank people specifically and tangibly, with thank-you notes and, where the IRB approves, gifts or gift cards. Do not assume participants know you are grateful, that their participation is helping, or that a publication using their data could not have happened without them; tell them.
Invite participants into the work where the IRB allows, for example as speakers in a webinar on parent experiences.
Let people participate asynchronously, at the hours their lives allow, on any device.
Offer a conversation as an alternative to a form: a semi-structured interview from which the coordinator codes the survey answers, with the participant's permission. End every check-in with an open-ended question, such as "Is there anything else you would like to share with us today that we missed?"
Make it easy to update contact details, and ask for them at every contact.
Offer more than one channel and more than one language where the cohort needs it.
Track retention as a number and discuss it at the weekly meeting.
Keep the coordinator in the coordinator's role: a sounding board and a connector, not a clinician or a social worker, with a plan for referring people who need more.

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

What AI can do¶

Draft newsletters, reminders, and plain-language summaries for you to check; schedule the sends; help code interview transcripts for a person to review.

What only a person can do¶

Be the reason a family stays; answer the hard question a parent asks; hear a story and know which parts belong in the record.

Take-home¶

People in rare disease communities often participate for others and for meaning; retention is a calendar of human contact that gives back as much as it asks.

Practice¶

Exercise¶

Build a year of outreach for your registry in the outreach calendar. Include follow-up reminders, the participant newsletter, the organization's general newsletter, office hours, an annual contact check, thanks, and one milestone. Then add, for each contact, how a participant could respond on their own schedule, and where the open-ended question goes.

Check your work

A strong calendar spreads contact across the year rather than clustering it around a grant, pairs every request with something given back (a result, a thank-you, an answer to a question), offers an asynchronous option for every survey and a conversation as an alternative to a form, and ends every check-in with the open-ended question. It also names who sends each item.

Your workbook page¶

The Outreach calendar 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¶

Why might a parent take part in observational research that is unlikely to help their own child?

Many take part for other families and for meaning: it gives what they have been through a purpose, and it can give hope and help with grief. A registry keeps them by honoring that.

What is one way to make participation possible for a caregiver who cannot predict their day?

Let them participate asynchronously, at any hour and on any device, and offer a conversation as an alternative to a form.

Up next: Staying in touch with participants is one part of belonging to a community; the next habit is being part of that community all year, whether or not anyone is enrolled. Continue to Chapter 14.