What do I do with these data? Scaling up a patient care innovation

ICISS screengrab2What happens when you try to scale up a successful quality initiative? Eric Fleegler, MD, MPH, and Eugenia Chan, MD, MPH, are facing that challenge with ICISS, their web-based system that went quickly from ideation to adoption by 3,000 patients with attention deficit hyperactivity disorder (ADHD) and their families.

ICISS enables parents, teachers and patients to give online updates on medications, symptoms and school performance in close to real time, then packages that data for clinicians in a visual, actionable fashion. But tasked with introducing ICISS into four other clinics at Boston Children’s Hospital—autism, asthma, depression and epilepsy—a raft of practical, legal and philosophical questions came up about how to handle these patient-generated health data. For example:

  • How should we inform families that they need to contact their provider directly with immediate concerns?
  • What if a parent indicates that a child is at risk of self-harm, and how can we manage this in a timely manner?
  • How can clinics afford to hire additional staff to screen and manage alerts from ICISS when this activity is non-reimbursable?
  • What is the obligation of the provider if actionable data show up months in advance of the scheduled visit?

Fleegler and Chan discuss the challenges and lessons learned in our sister publication, Innovation Insider. We’d be interested to hear from others facing similar questions in handling patient-generated health data.