Rethinking the Patient’s Place
We’re constantly thinking about different ways patients can be effective agents within the healthcare system. Here’s what we’ve been working on.
A Platform For Change
healthexperiencesusa.org, created by researchers affiliated with the Center and HERN, or the Health Experiences Research Network, seeks to provide a platform to educate patients, caregivers, and others. The Center for Patient Partnerships is committed to supporting this platform as a tool to share our research findings in a democratic, approachable way.
This ongoing initiative has already produced results: a study and module titled “Young Adults’ Experiences With Depression.” Thirty-eight young adults were interviewed about their experiences with depression. Our faculty, in partnership with HERN, synthesized the trends they observed, and the results speak for themselves—a resource that is academically vetted, yet approachable, designed from the ground up to be useful to researchers and the public side-by-side.
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 and a national team of partners, 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.”