MHN 2016: Key to patient-generated health data is designing for specific populations

By Jonah Comstock
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At the MobiHealthNews 2016 event in San Francisco last week, one panel discussion on patient-generated health data came back again and again to the idea of patient-centricity and the importance of incorporating patients into the design of digital health interventions.

“It’s really not just patient-generated data, it’s patient-focused data, which means everything from the collection of the data, to the flow of the data, to the insights that derive from that data, is all centered squarely on the patient in their life trying to live with their condition or trying to remain healthy or stay healthy,” Dr. Greg Weidner, the director of primary care innovation and proactive health at Carolinas HealthCare System, said. “It’s really about leveraging technology to enhance or extend the relationship people have with their healthcare team. That’s how you get real engagement.”

Carolinas involves patients in the design and testing of PGHD projects via its Center for Proactive Health and Design, a design lab within the hospital helps Carolinas have innovation cycles that last weeks rather than months.

During the panel, which I moderated, Weidner was joined on the stage by Validic's CTO and co-founder Drew Schiller, Garmin's Manager for Health and Wellness Allison Swelin, and Dignity Health's Director of Strategic Innovation Sanjay Shah. 

Getting a patient-generated data project off the ground starts with enrollment, Shah pointed out, and enrollment is an area where it’s particularly important to not just design for the patient, but design for your particular patient population. What works for millennials might not be best for an older population, for instance.

Schiller gave one example of a novel enrollment strategy that went after a very specific patient population, a study launched by Glooko where the target population was teenage girls. The only way they could unlock their phones was to take a glucose reading.

“At certain times, you had to take a reading if you wanted to use your cellphone,” he explained. “So adherence in that trial was 100 percent, because they wanted to text their friends, they wanted to be online. That’s an example of how you can design an intervention to have massive engagement just based on the usage patterns of the people you’re trying to work with.”

While it might not be scalable to extend this to adults by holding their smartphones hostage, Schiller said the study shows these types of interventions might work for kids and teens, if they help them build habits that persist into adulthood. Shah agreed.

“I would submit that using a habit-based approach really leverages what draws people to mobile technology in the first place,” Shah said. “How many folks get a buzz or a beep and they check their device to see if they got a text message or a social media post? Those are not decisions people make. Those are hard-wired, habit-based responses. Why would we not leverage that to create healthy behaviors? I think that’s more scalable than the 'motivate and educate' approach that is our traditional way of having people make healthy behavior changes.”

On the other end of the patient spectrum, panelists spoke about accommodating older populations that are sometimes less tech-savvy. For instance, Swelin talked about some of the features that made Garmin popular with seniors: long battery life, water resistance so it can be worn in the shower, and a long internal memory so it can be used by patients who don’t have smartphones or aren’t able to otherwise send data regularly to care providers. 

Patient-centered design is easy to talk about, but in real life it can mean letting go of features your innovation team might be really attached to, if it turns out they’re not what the patients need or want.

“A general theme is the importance of simplicity,” Weidner said. “Whatever you think is simple enough, take it down two or three notches and then maybe it’ll be close. Because what you really want to do, whether you’re a device maker or you’re in the tech space building apps, we all want it to be so feature-rich. We want to throw everything we have at the patient. But what they’re telling us is ‘Your solution is not my problem’. And so, keep it simple. Rather than give someone a box of foldable maps or atlases to get from point A to point B, give them a device where all they have to do is press a button and now they’re GPS-style going step-by-step. So all they have to do is take the first step.”