Health IT

Crowdsourcing research ideas from patients finds cost, prevention top of mind

The Regenstrief Institute, an informatics and healthcare research foundation affiliated with the Indiana University School of Medicine, recently did something PCORI would approve of. It asked patients across the country for their ideas on how to make healthcare more affordable and better quality. Dr. Mike Weiner, director of the Institute’s Center for Health Services Research, […]

The Regenstrief Institute, an informatics and healthcare research foundation affiliated with the Indiana University School of Medicine, recently did something PCORI would approve of. It asked patients across the country for their ideas on how to make healthcare more affordable and better quality.

Dr. Mike Weiner, director of the Institute’s Center for Health Services Research, said most of the entries in the People’s Choice for Healthcare Delivery contest, which started in the fall, addressed the cost of healthcare as an issue that’s critical to patients.

“A number focused on prevention rather than just treatment of disease, and we saw several proposals looking at ways to improve obesity and cardiovascular disease, both of which are big contributors to morbidity,” he said. “Many others were focused on a topic area that I call communication, education and relationships in care.”

That was the case of the winning entry – a computer app that would translate what happens during a visit to the doctor’s office into in a printable summary of action items for a patient to take home. Fittingly, consumers in a recent Consumer Reports survey said the thing that bugs them most about going to the doctor is unclear information about a condition or treatment.

Kristina Fasteson Simacek, a doctoral candidate in sociology at IU, submitted the idea and will work with the Institute team on initial development and pilot testing. “Our intent is that that will lead to a larger project and a new proposal that we could submit for additional funding,” Weiner said.

Weiner, who’s also an associate professor, director of the IU Center for Health Services and Outcomes Research, and principal investigator with the Veterans Affairs Health Services Research & Development Center of Excellence on Implementing Evidence-Based Practice, noted a few smaller themes that also emerged from the contest submissions.

One was the need to decrease the overuse of emergency departments, and another was how to help both patients and providers make better medical decisions, he said.

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Regenstrief hosted the contest not only to identify problems that patients wanted to see addressed, but to get the public engaged in science.

“We’re just one more example of this notion of crowdsourcing to identify some important agendas that may play a useful role in science,” Weiner said. “(As an industry) we’re starting to see more and more that we’re involving patients in the agenda-setting and the planning to help us think about what studies should be done.”

[Photo from BigStock Photos]