How to Choose a Caregiving App: The Questions to Ask

Write down who is in the circle today and who might join: the siblings, the spouse, the hired aide who comes on Tuesdays, the neighbor with a key, the parent themselves. Then, for each person, decide what they should be able to see and change. An aide needs the day's tasks and the medication times, not the bank statements. A parent may want to see their own appointments without reading every note written about them. A sibling across the country needs everything, in real time.

Now ask the app whether it can say no. Roles and permissions sound like corporate language, but for a family they are the difference between a tool everyone trusts and one that leaks. If every member sees everything, the most private things will never be written down, and the record stops being complete. Long-distance caregivers in particular depend on a shared record being the one true version of events.⁴

Two years from now the app may be gone, or you may want to leave it, or a sibling may want to move the family to something else. The records inside it are your family's memory of this stretch of life: every medication change, every appointment, every note from a visit. Ask, before you start, whether you can export all of it, in a form a person can read and a form another tool can import, and whether the uploaded documents come with it.

There is a useful standard to hold an app to. Federal law gives a patient the right to a copy of their own medical records from their doctors and health plans, within a set time and in the form they ask for.³ An app that holds a family's record of care should offer at least as much. If the answer is a screenshot or a PDF emailed to you one item at a time, that is a no.

The Federal Trade Commission's advice to consumers about health apps is blunt: look for a privacy notice that explains in plain terms what health information the app collects, how it uses it, and whether it shares it with other companies, and check the settings to see what you control.¹ Many health apps are not covered by the health privacy law that binds your doctor, which is why the notice is what you have.¹

Since 2024 the FTC has required apps that handle health information and are not covered by HIPAA to tell people when their data is breached or disclosed without permission.² That rule exists because it was needed. So read the notice for three things: is anything sold or shared for advertising, is the data encrypted when stored and when sent, and what happens to it when you close the account. A company that cannot answer those three in a paragraph has told you something.

Most caregiving apps are built for the caregivers and forget the person at the center. Ask whether your parent can have their own view: their appointments, who is coming today, what their pets are up to, without the notes caregivers write to each other. A parent who can see their own plan is a parent who feels coordinated rather than managed.

Then ask the questions that reveal whether the app was built for a real household. Can it hold a pet's medications and vet visits beside a person's? Can two parents, or a parent and an aunt, each have their own circle under one account? Can a caregiver who reads Spanish or Tagalog or Korean use it in that language, with the notes translated for them? CareCoordinate was built around those questions because our own family asked them; whichever tool you choose, the answers tell you who the designers had in mind.

Pick a two-week trial and use it for the actual week: the pharmacy run, the cardiologist on Thursday, the sibling who forgets to log a visit. Watch what people stop doing. If the person who is slowest with phones is the one who gives the medications, the app has to work for them first. Decide at the end of two weeks, together, and move everything or nothing.