A patient in a German schizophrenia trial got worse for weeks. The smartphone app built to catch it raised no alert during that stretch, because the worsening stayed just below its threshold. After declining a hospital admission, the patient stopped using the app and stopped answering calls. The care team found out what happened only when study staff phoned the family member listed as an emergency contact. The patient had been hospitalized.
That case is one of six described in a new paper in npj Digital Medicine from ILIA, a randomized trial at eight sites in Germany testing a relapse-prevention app for people with schizophrenia and schizoaffective disorder. The trial’s results on hospitalizations are not out yet. This paper reports what got in the way of using the app in real care, drawn from a workshop held midway through the trial.
I am a mother whose daughter lives with schizophrenia. I read those six cases the way families will read them.
In another case, a patient’s phone broke and they forgot their password. App use stopped. A relapse that ended in the hospital was never recorded by the system. The authors write that backup contact strategies, “such as caregiver contact,” can keep monitoring going when the app goes quiet. Workshop participants called family members and close contacts “a frequently overlooked facilitator.”
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Here is the pattern. Remote monitoring assumes the patient keeps reporting. Relapse is often exactly when that stops. A worsening episode can bring suspicion of being watched, disorganization, a lost phone, a dead battery. When the data stops, the system goes blind at the moment it was built for. In ILIA, the person who could still see was a family member, reached only because the study team had written down a phone number.
The paper is just as clear about the clinical side. Of 120 clinicians who could have taken part across the eight sites, 80 attended onboarding and 30 recruited at least one patient. Clinicians got no direct incentive for the extra work, fit it in around their regular duties, and had to document each patient contact twice: once in the app’s dashboard and again in the hospital record. “Ideally, there should be some dedicated time or a day when we can focus solely on the app,” one clinician said. The authors note that the support that made the trial work was funded by research money, “resources that are rarely available in public-sector services.”
I wrote recently that remote patient monitoring in psychiatry needs an owner. ILIA adds a second point. It also needs a backup, and in many homes the backup already exists.
What would building families in look like?
- Name a trusted contact at enrollment, while the patient is well: ILIA recorded emergency contacts only if participants agreed. That consent conversation should be a standard step with a clinician, not an optional field.
- Treat silence as a signal: When a patient stops logging, the next step should be a call to the named contact, written into the protocol, not left to whoever thinks to try. The authors call for escalation plans “that do not rely solely on patient-initiated contact.”
- Let families report in, not only get called: A parent who notices three nights without sleep has information a weekly questionnaire may miss. A simple way to send it to the care team belongs in the design.
- Start at discharge: One workshop participant suggested setting patients up on the app before they leave the hospital, because “it’s also the most risky period for the next relapse to happen.” Families are often there that day. That is the time to name the contact and explain what happens when the app goes quiet.
The authors write that future work should evaluate how relatives and peers “can be involved systematically.” I agree, and I would go further. The family contact should be designed in from the start, with the same care as the alert threshold.
Families are already doing this job without a login. In ILIA, a phone number on an intake form was the only thing that told a care team where their patient was. That should not depend on someone remembering to write it down.
Nicole Drapeau Gillen is a mother, advocate, and author who translates the fast-moving landscape of technology in serious mental illness (SMI) care into guidance families and clinicians can use. Thrust into caregiving for a loved one with SMI, with no direction on how to help, she turned that experience into a mission, writing two books and building an ongoing effort to bring families and clinicians into the conversation.
Her first book, Schizophrenia and Related Disorders: A Handbook for Caregivers, is a reference for every stage of caregiving, endorsed by Dr. E. Fuller Torrey as a must-read for SMI caregivers. Her second, Connected Care: A Practical Guide to Technology for Serious Mental Illness, maps apps, artificial intelligence tools, telepsychiatry, and brain-based treatments for a field moving faster than anyone can track. Dr. Akira Sawa, director of the Johns Hopkins Schizophrenia Center, has said the book “directly addresses” significant gaps.
