AI apps help caregivers, but still leave work to families

Apps for different needs

Families have different needs, so apps offer different features.

Six months ago, Citizen Health introduced Ari, an AI health assistant. Patients and caregivers can message it to track a loved one’s care and symptoms. Ari is still in beta and can access medical records, patient portals and Google Calendar events, including appointment and surgery dates. The system identifies patterns in caregivers’ actions — for example, when they give medications and how that might be connected to symptoms. Before an appointment, Ari summarizes the medical history and suggests questions for the doctor. It also helps users navigate insurance and government benefits. The service is currently available only to people with rare diseases; the company wants to expand it to all patients and caregivers.

The benefits depend on data and safeguards

I. Glenn Cohen, a bioethics and health law researcher and professor at Harvard Law School, believes AI can help patients prepare to talk with a doctor. But users need to understand the risks and assess what they are getting, he says, especially if an app is free or inexpensive.

Most products of this kind are not classified as medical devices, Cohen notes. That means the U.S. Food and Drug Administration has not reviewed their safety or effectiveness, leaving users to rely on companies’ claims.

Health information that patients and caregivers enter into AI apps generally is not covered by the federal HIPAA rules on medical data protection. It does not come from an organization subject to those rules; it comes from the individual or is collected at home. When it comes to data use, users may sometimes have only the promises in a user agreement to rely on, Cohen says — and in many cases, those agreements absolve the company of responsibility. The information collected may concern not only the patient but also their parents or other caregivers.

The article’s author cares for a son with multiple health conditions and sees value in keeping his information in one place: it makes it easier to spot patterns, share updates with doctors and hand off caregiving responsibilities to a spouse. But the app has to be updated regularly.

Denise M. Brown, CEO and founder of Caregiving Years Training Academy, says many apps have shut down because they are difficult to maintain, especially when caregivers are already overwhelmed. Caregivers have to upload care plans, schedules and tasks themselves, she says. Doctors, home health nurses, therapists and hospital discharge specialists generally do not log into the app to make updates, so the work falls back to caregivers.

Nicole Howell, director of direct-care workforce development at the National Council on Aging, believes technology can make coordination among people involved in care easier and reduce the burden on families. But no single family or individual can solve the caregiving crisis: it requires coordinated action by the government, the private sector and families willing to speak openly about the problem.

Dataist’s take: Apps can help families coordinate care and preserve important information, but they do not remove the responsibility to keep records themselves. The value of these services depends on how easy it is to keep information up to date and what safeguards companies provide to protect it.