Health System Transformation

Learning From Patients


Policy discussions in health care have to be open to patients’ voices. Policymakers have to listen, process, and act in solidarity with patients and their families. The Center tries to serve as a megaphone, interjecting patient perspectives where they matter most: At professional conferences, boardrooms, and politician’s offices.


Low-Value Care from the Patient’s Perspective

Director of National Initiatives Rachel Grob and Center associate Mark Schlesinger presented about “low-value,” or unneccessary and redundant health care, at a small invitational meeting by the ABIM Foundation and AcademyHealth. They delved into patients’ perspectives—what patients think about, and how they respond to, this kind of care.


From Stories to Science

As advocates and researchers, we have to develop a way to share the hundreds of  patient stories we hear in a meaningful, powerful way. The scientific method allows patients’ voices to take on a new power, where anecdotes become data. Collecting this data into documents allows us to identify shared experiences which, together, become powerful truths to make change in the system.

With this goal in mind, our Director of National Initiatives, Rachel Grob, developed a new way to ask patients about their health care experiences. Called the “CAHPS Patient Narrative Elicitation Protocol,” it’s a set of five questions made to give patients space to share their stories while maintaining rigorous scientific standards for data collection and collation. Its innovation is in its open-endedness—unlike other protocols, which might hone in on specific elements of a care experience, these questions make sure patients felt comfortable discussing whatever they needed to. They encourage responses that, in Dr. Grob’s words, are “complete, balanced, meaningful, and representative.”

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