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Patients As Designers Of Their Own Health

Seattle’s grassroots healthcare community continues to gain traction with a new meetup for patient-centered design. Last week’s meeting was generously sponsored by MCG a subsidiary of Hearst Publications who are quite active in the healthcare world with content and education. The panel discussion featured Dana Lewis, a patient-maker who is active in the open source movement for diabetes care and built her own artificial pancreas, Christina Berry-White from the digital health group at Seattle Children’s, and Amy London, Innovation Specialist at Virginia Mason. The group talked about how to effectively get feedback from patients, and how patient hackers like Dana can take poor design into their own hands build tools they need, and ultimately influence large healthcare companies, in this case device manufacturers.

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Dana, Christina, and Amy, photo credit Alina Serebryany

The panel had great advice for understanding and developing products and improving processes for patients, as well as for soliciting feedback from patients. Here are a few of my takeaways.

Tips for developing products and process

  • Understand patient’s goals and desires. Often the goals of the hospital or health system are not the same as the patient’s. After meeting with a group of patient advocates one Virginia Mason surgeon realized that the only outcome that really mattered was whether the patient had a positive experience.
  • Let patients customize their views and experiences. Amy talked about a particular chart where she wanted to see the graph rising to show increasing blood sugar and another user she talked to wanted to see the graph lowering to show insulin lowering and a need for intervention. Amy was confused by this view but created her open source artificial pancreas interface to enables people to choose their own view, and the result was that people who had diabetes looked at it the same way Amy did and parent-caregivers of diabetic children wanted the second view. Which brings us to the next point–
  • Differentiate between users. Patients often have different requirements than their caregivers, whether that’s parents caring for a child or teen, or adult children caring for a parent. As well, the clinical workflow shouldn’t dictate the patient experience.
  • Get feedback early. Amy mentioned meeting with a device manufacturer who showed her an almost ready for release glucometer that was intended to fit in the pocket. She quipped “you obviously didn’t test this with women’s pockets.”

Tips for collecting feedback

  • Build it into the product. Christina from Children’s mentioned that when they switched from reams of paper to an iPad-based tool for patient on-boarding forms the physicians wanted to stop using it because it did not immediately integrate with the EMR. Luckily the tool had a feature to survey users on whether they preferred using it to paper, and the answer from parents was overwhelmingly yes. The digital health team showed these results to the physicians, and the tool stayed in place.
  • Be creative when soliciting feedback. Children’s knew from experience that parents and patients were reluctant to give them negative feedback after a lifesaving experience like an organ transplant, so they used techniques that are often used in brand market research: analogies. For example, they asked teens to describe a digital tool as a car, and found out that their tool was like a pick-up truck to them: useful but utilitarian.
  • Use patients to collect feedback. Patients are also often intimidated to provide direct feedback to healthcare professionals as they see them as authority figures. At Virginia Mason patients who have already had a successful joint replacement visit post-surgical patients to find out how they are doing, and talk about their own experiences. Patients are a lot more candid with each other, and Virginia Mason was able to benefit from understanding the questions they asked the peer ambassadors and incorporate that information into formal programs.
  • Ask the questions at the right time. If you want to understand post-operative experiences ask within a few weeks of the actual experience, not 6 months later.
  • Be aware of selection bias. Patients who volunteer for focus groups are often those who have the time and money to be able to do so. Your feedback may be skewed towards retired patients, and those who are not hourly workers. Consider how you will cast a wide net.

Lots of great advice at this event, much of which we already incorporate into our processes and products at Wellpepper, although I definitely got some new ideas and it’s great to see the community coming together to share best practices. My only disappointment with the event was that with a title of Patients as Designers, I expected to see more patients on the panel. While there was a last minute cancellation of a patient-maker, it would have been amazing to have Children’s and Virginia Mason bring one of their patient-designers to be on the panel. Maybe next time?

Posted in: Healthcare Disruption, Healthcare Research, Healthcare Technology, Healthcare transformation, Lean Healthcare, Research, Seattle

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