Getting Your Family's Data Out of a Caregiving App

The law already recognizes this principle for medical records. A patient has a right to inspect and obtain a copy of their health information from the providers and plans that hold it, and those organizations must act on the request within 30 days.¹ Federal guidance walks patients through getting their records and encourages them to keep their own copy.² A caregiving app is not a doctor's office, but the records a family keeps in it are no less theirs. The test is simple: can you leave with everything, and could you come back?

An export worth the name has three parts. First, every kind of record the app holds, not just the medication list: appointments, visits, notes, vital signs, providers, insurance, bills, documents, pets, the people in the circle and their roles. Second, the uploaded files themselves, the scanned prescriptions and discharge papers, not links to them. Third, two forms of the data: one a person can open and read, like a spreadsheet, and one a machine can read back exactly, so another tool can import it without guessing.

In CareCoordinate the circle export is a single zip holding a spreadsheet to read, the complete data behind it, and every document, and Settings > Import reads that zip back into a circle, re-invites the caregivers who were in it and hands them their records when they rejoin. Whatever tool you use, ask it the same three questions and expect the same three answers.

Export is half the story. The other half is what happens when you want the records back in: after a deleted account, after a move to a new circle, after a sibling takes over. Ask whether the import restores everything or only the parts that are easy, whether it lands in the right place, and whether the people who used to be in the circle can be invited again with their history intact. A tool that exports but cannot import has given you a filing cabinet with no door.

Ask these in writing and keep the answer: Can I download everything, including documents, at any time? In what formats? Can I import it back, or into another circle? What happens to my family's data when I close the account, and how long until it is deleted? The privacy notice should answer the last one; the FTC tells consumers to read it for what is collected, used and shared, because many health apps are not covered by the health privacy law that binds your doctor.⁴ Since 2024, apps that handle health information outside HIPAA must also notify people when that information is breached or shared without permission.³

Do not wait for the day you need it. Start a plain copy now: the current medication list with doses and prescribers, the doctor list with phone numbers, the insurance details, the standing appointments, and the location of every important document. Request the medical records themselves from the providers who hold them, which is your parent's right.¹ Then move the family on your own schedule rather than the app's, and this time ask the export question first.