Patient Voice Institute Prepares Patients for Their Seat at the Table

By Jennifer J. Salopek

Patient engagement. Patient-centered care. Patient empowerment. E-Patients. Relationship-centered care. All of these phrases and more have featured prominently in the health care conversation since the passage of the Affordable Care Act. While there is no doubt that patients must be actively involved in their own health and in the redesign of our health care system, how do we ensure that they are equipped to participate fully and sufficiently connected to make a difference?

A new organization, the Patient Voice Institute, aims to answer those questions and more. Founded by Pat Mastors and Diane Stollenwerk in response to the launch of the National Quality Forum’s Partnership for Patients. “That just struck us the wrong way,” says Stollenwerk. “Where was the partnership with patients?”

As academic medical centers and health systems struggle to find a replicable model for what patients need and want, “They’re all grabbing different parts of the elephant,” Stollenwerk says. “There is no excuse for any health care organization to stay that it’s too hard to engage patients.” However, she acknowledges that some patient advocates have made institutions leery of having “flame throwers” on their governing or advisory boards.

“The Patient Voice Institute was created to enable the culture change required to put patients at the table with equal power in an academic medical center,” she says.

A consultant who has worked with such diverse organizations as Children’s National Medical Center and Pantheon Software, Stollenwerk holds a Master’s in public policy and business from the JFK School of Government and Harvard Business School. Mastors brings the patient advocate perspective. A former news reporter, she cared for her father throughout his struggle with and eventual death from an infection acquired at an academic medical center.

“I had spent my whole professional life trying to give people information to help them live better lives. But infections were a threat that was hiding in plain sight,” Mastors says.

The goal of the Patient Voice Institute is to fully engage patients as an equal market force in health care, equipping them with channels, connections, training, and tools to carry their stories forward with an evidence-based set of principles, “so that their stories cannot be dismissed as irrelevant or anecdotal,” says Stollenwerk.

It’s an idealistic notion, admits Mastors: a health care system that serves everyone, with no winners or losers. To become a true market force, patients must add value. And to do that, they must have a support organization that is reliable for consistent messaging and training; thus the creation of PVI. Its innovation is in its comprehensive, horizontal and vertical approach, comprising policy, operational issues, clinical interaction, and the creation of a community. It is undergirded by a foundation of patient voice principles. PVI’s target audiences are two: patients, who must be equipped to ensure that being patient-centered is easy and seen as an asset; and institutions, which may need help with regulatory expectations, measures, and performance incentives.

Stollenwerk hopes to provide touchpoints for educators and students as academic medical centers educate the next generation of physicians; PVI will serve as a connection point for clinical faculty who want to bring in patients to talk with medical students and residents.

While firmly buttressed, the model permits for flexibility based on input and feedback.

“Given an open forum, I would ask teaching hospital CEOs how they’re doing with patient engagement,” says Mastors. “Is it a priority? Do they believe in it? What kind of help can they use in implementing it?”

Jennifer SalopekJennifer J. Salopek is founding editor of Wing of Zock. She can be reached at jsalopek@aamc.org, or follow her on Twitter @jsalopek.

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