Center for Patient Partnerships: Improving health care through patients' stories

Where online information about the quality of health care providers is concerned, more doesn't always mean better. Websites designed to rank provider options according to patient experiences abound, but the information can overwhelm consumers with abstract, poorly presented data, studies show. What’s more, numbers alone rarely offer consumers what they most want to know, or help providers understand how to get better at what they do.

The Center for Patient Partnerships, based at the University of Wisconsin Law School, wants to help cut through the online confusion. Thanks to a three-year grant from the Agency for Healthcare Research and Quality, CPP is researching ways to collect patients’ stories, in their own words, to improve public reporting.

When making important medical decisions, people want to hear health care stories, and they want to tell their stories, says Rachel Grob, CPP’s scholar-in-residence and its director of national programs. “But so far, narratives about provider experiences have not been incorporated into the public reporting in a methodologically rigorous way.”

Scholars from Yale University and RAND Corporation, partners in the study, will examine multiple ways to collect and present data for public reports. Grob will lead the qualitative arm of the research, collaborating with the rest of the team to employ the power of story to enhance online reporting tools.
Since 2001, CPP has provided free advocacy services to anyone with a serious or life-threatening illness. Affiliated with UW-Madison's schools of law, medicine and public health, nursing and pharmacy, the center offers experiential education for graduate and non-traditional students who learn to act as advocates for the center’s clients. The center also serves as a hub for research, policy and community initiatives designed to increase and promote understanding of patients’ experiences.

Listening is a key skill for the health care advocates at CPP, and staff and students there are trained at eliciting patients’ stories, Grob says. Their challenge for the study, which is already under way, will lie in capturing rich, well-balanced information in a short amount of time and organizing it online in a useful, engaging manner.

“Ultimately, we want to elicit responses that serve as opportunities for study participants to reflect on their health care experiences in ways that are as beneficial to them as they are to our research,” Grob says. “That's the goal of our work, and the goal of any research, to be transformational for both parties.”

Submitted by Law School News on February 13, 2013

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