Family caregivers — as well as older children and adolescents — now have a powerful health data tracker. With a free iPhone app called Caremap, they can securely store and organize vital medical information, share it with health professionals, track health metrics important to them and gain insights to inform care.
For Michelle Domey, that means keeping close tabs on her son Carson’s Crohn’s disease. It means understanding early warning signs and what triggers a flare, like not getting enough sleep. “When he has a flare, the app is something we could take into an appointment,” she says. “We have historical data that can show us what may have triggered it.”
Tools and apps designed to engage children and families in their care are proliferating. But are they meaningful? At its best, patient engagement isn’t just technology that brings lab results and medication reminders to a patient’s or parent’s iPhone. It’s about creating a relationship in which families are able to specify their care needs; clinicians and families learn from each other; and patients and families are able to manage their own care.
Patients and families are not just consumers of health care—they define goals and priorities. Their insights are essential.
A powerful tool for supporting a meaningful family/provider relationship is the Care Map. It was developed by Cristin Lind, parent of a child with special needs, who found herself in the role of care coordinator, …