Disease management meets intelligent design

At a conference in Texas a couple of years ago, I found myself – as at all good national conferences — talking to a colleague from my own institution. As we browsed the poster session, we talked about our respective work.

Eugenia Chan works in the Developmental Medicine Center at Children’s Hospital Boston, where I’m an emergency physician and health services researcher. I told Eugenia about The Online Advocate, a Web-based system I’d been developing for the past eight years. It screens patients and families for health-related social problems, provides feedback and helps them find services in their area that can assist them.

Eugenia was excited about bringing The Online Advocate to her patients.“This is really great, and I want to use it,” she said. “But I have another idea that I would like to explore with you.”

The Developmental Medicine Center relied on children’s parents and teachers to complete extensive questionnaires to help providers understand their patients’ problems. Providers would give the parents paper questionnaires to fill out themselves and to pass on to teachers. But only 30 percent of parents and fewer than 10 percent of teachers were completing them.

These results weren’t surprising. We all know how hard it can be to remember both to fill out a form and to send it in. It’s not convenient, the forms are cumbersome and long, it takes additional energy to return the forms to the clinics, the parents have to get the forms to the teachers — the list goes on.

As Eugenia and I talked about the challenges of collecting quality patient data and reviewing it in real time, I realized that we could use the skills my small team had developed in online questionnaire design. WIth funding from her department, I hired a second full-time software engineer, and Eugenia and I worked with my team of programmers to sketch out what became the electronic Developmental Medicine Center (eDMC).

We knew that the interface needed to be as simple and user-friendly as possible, removing any barriers that would keep parents and teachers from using it. At the same time, it needed a sophisticated graphing and report mechanism to ensure that providers could extract as much value as possible from the system.

We met every other week to review our design progress, brainstorm how users would best interact with the system and discuss how to make the software fit easily into Developmental Medicine’s operational flow. We asked parents and other providers to beta-test the system and provide us with feedback. All the while we refined the interface, expanded the provider’s view of the data collected and created ways to transfer it into patients’ medical records.

The software launched last July, and currently we have over 1,000 patients enrolled. Questionnaire response rates have jumped to over 70 percent for parents and over 50 percent for teachers. And whenever I talk to Developmental Medicine providers, they tell me that eDMC has changed the way they practice medicine.

When I talk to doctors in other clinics about eDMC, I hear a familiar refrain: “This is really great, and I want to use it, but I have another idea that I would like to explore with you.”

Which of course has led to new opportunities. The Department of Neurology wants to track symptoms across a spectrum of diseases. The Department of Psychiatry is interested in tracking medication side effects to prevent adverse reactions. Our Adolescent Medicine clinics are trying to find ways to motivate adolescents to fill out questionnaires at all.

Next on the agenda are mobile apps. And as my team develops these disease management systems, we’re integrating our work with The Online Advocate — with the firm belief that the best way to improve a patient’s health is by addressing the family’s needs as a whole.

Eric Fleegler, MD, MPH is a pediatric emergency medicine physician and health services researcher in the Division of Emergency Medicine at Children’s Hospital Boston. He co-directs the Sedation Service for the Department of Medicine,  founded and directs The Online Advocate, supported by Children’s Hospital Boston, the Mayor’s Office and the Boston Public Health Commission,  and is co-developer of eDMC. His research focuses on health disparities, improving social determinants of health and developing systems to improve management of chronic diseases.