Patients' View Partners
A trusted viewpoint on what patients want and need most
Too many organizations get lost in the weeds of turning around bad survey results over things that might not matter to the next round of patients. The "next round" might have different diagnoses, demographics, or expectations. In the last decade, while consulting with RWJF, IHI, AHRQ, NQF and other groups to bring "the patient's view" to their improvement projects, this fundamental disparity drove me a little crazy. How could we millions of patients and families present our top needs - irrespective of diagnosis or demographic - more cohesively, so they can be addressed more systematically?
We knew a world of rich, compelling truth existed within patients' stories. Surveys just can't capture the authenticity and credibility that exist in first-person accounts. So we created a place where patients could share their stories, unabridged, in whatever mode they wanted - written, video, audio, phone calls, snail mail (and one graphic storyboard). We gave out prizes on a national stage to stories with the most impact. And in the 12 hundred-plus stories patients and families shared with us at the Patients' View Institute (PVI), big truths revealed themselves. Like the fact that feeling "seen" and valued by our medical teams is a game-changer in our experiences as patients.
Now, through consulting, presentations, workshops and collaborations, PVP is a voice for patients' call to action.
Pat's journey on behalf of patients began with a medical event within her own family and ultimately led her to leadership positions at the national policy level. A former broadcast journalist, she believes change starts with awareness, and individuals' feeling empowered to act. This prompted her to create a bedside tool for patients giving them a degree of control over their environment, and to write and publish a book engaging the non-medical person in understanding the complexities of the health care system.