Solving patient engagement: It’s about the data

by Tom Ulrich on September 27, 2013

Doctor and patient reviewing health data collected in an EMR.At the start of today’s National Pediatric Innovation Summit + Awards 2013 panel on patient engagement, healthcare journalist Carey Goldberg offered up a personal anecdote about engagement— or the lack of it—in medical care:

“I was having a minor dermatological procedure, and right before it started, I said to the doctor, ‘This really is a good idea to get this done, right?’ And she said, ‘No, actually, you don’t really need to get it done.’ And I didn’t stop the procedure. And I realized that I embodied the problem of patient engagement. It is a piece of [the health care] puzzle.”

Goldberg’s story framed a discussion that ranged from outcomes measurement to data access, from healthcare incentives to care coordination—all centered on one overriding question: How do we encourage patients to become more engaged in their own medical care?

And given the number of topics that were covered, it’s clear how complex a question that is. It’s one that engages multiple stakeholders—patients and their doctors for starters, but also insurers, policymakers and regulators, health care systems and more.

But one clear theme wove through the whole panel: Data is king. To get patients engaged, you have to be able to give them data—about their own health, about which treatments work and which don’t, about outcomes that are important to them. After all, as panelist Kathleen Carberry, who directs Texas Children’s Hospital’s Outcomes & Impact Service, said, “You manage what you measure.”

But it has to be the right data, and those data have to be able to answer the right questions, especially ones of outcomes. Panelist Kenneth Mandl, MD, PhD, who leads the Intelligent Health Laboratory at Boston Children’s Hospital, noted that no one keeps track at a group level of whether patients who receive a particular treatment have a good response or a bad response, so that the treatment can be adjusted for future patients.

“We don’t learn from the everyday health care encounters in the care delivery system,” he says, referring to how current EMRs don’t allow data collected in day-to-day interactions between physicians and patients to inform improvements in health care overall.

“There are really two groups who need direct access to those data in some way,” he added. “Doctors and patients.”

How those data get accessed, even when they’re collected, is a major sticking point. Much criticism was aimed squarely at the electronic medical record (EMR) systems developed and put in place in thousands of hospitals and doctors’ offices across the nation. What’s lacking in these systems, the consensus was, is the capability to share data across sites, aggregate and analyze those data, and help change practices in what Mandl called a “learning healthcare system.”

As Carberry noted, the promises made about EMRs regarding ease of data access haven’t panned out, especially outcomes data. “There’s an impression that EMRs make those data more available.  Sometimes, they make it harder,” she said. Panelist Andrew Farquharson, managing director of the venture capital firm VentureHealth, pulled no punches, adding that, “We all know what a disappointment EMRs have been. Administrators running these systems don’t have incentives to get outcomes into the systems.”

So how can we fix EMRs to make them more useful for patient engagement? Carberry suggested that government regulators send people to the bedside and see firsthand the interactions between providers, patients and EMRs. EMRs should be designed by people who actually have to use them. Iya Khalil, PhD, a panelist from data modeling firm GNS Healthcare, noted that more clinically relevant data need to be captured to draw a picture of treatment effectiveness, not just efficacy.

Mandl offered up one encouraging point: Under the Affordable Care Act (ACA), patients should be able to access their own data, which can help with patient engagement.

With that, he said, will come opportunities to bring patients and families into the conversation about what treatments are actually effective and ask what outcomes are actually important to them, going beyond changes in biomarker levels to whether their child was able to go back to school.

Christie Hagar, a panelist from the U.S. Department of Health and Human Services, added that provisions and requirements in the ACA will help people use data and learn what they need to learn to help coordinate their own care.

“The old paradigm of the patient being advised to bring their bag of prescription bottles with them as they go from provider to provider, so the doctors know what they’re taking, is now going to be transformed into the subject of data that patients have access to,” she said. “This is how patients are able to be more empowered and closer in engagement with providers about what their care is and how they can have a part in making sure it’s as effective as possible.”

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