On January 15, Community Catalyst, a national consumer health advocacy organization, launched its Center for Consumer Engagement in Health Innovation at the National Press Club, in Washington, D.C. The event drew more than 150 leaders in health care and advocacy, including representatives from government agencies, consumer groups, academic institutions, professional associations, foundations, and think tanks.
The center was created through a five-year, $14.8 million legacy grant, awarded in 2015 by The Atlantic Philanthropies, to advance the role of consumers in health system transformation—that is, changes in the health system that are reshaping the delivery of health care for all Americans. Thus far, that redesign of the health system has been akin to the remodeling of a house when the architect and the contractors are calling all the shots without consulting the homeowners about their preferences.
The Atlantic Philanthropies grant was one of several “legacy grants” given by the foundation to make “big bets” to drive health care forward. Using part of the grant, the center will provide consumer health advocates with the “next-generation” skills they need to critically evaluate new models of care, as well as the organizing and technical knowledge necessary to go toe-to-toe with powerful stakeholders in efforts to redesign the health system. A central goal of the grant is to ensure the long-term sustainability of consumer advocacy efforts.
The center is also generously supported through a grant from The John A. Hartford Foundation, which backs collaborations of consumer advocates with geriatrics professionals.
At the launch, I shared the center’s policy priorities. The center brings a strong focus on health equity, and a particular emphasis on the care of three vulnerable populations: older adults and people with disabilities who have both Medicare and Medicaid coverage (“dual eligibles”); people with substance use disorders and mental illness; and children and youth with special health care needs.
The center serves as a hub devoted to teaching, learning, and sharing knowledge to bring the consumer experience to the forefront of health and to shore up the “whys” and “hows” of consumer engagement. To this end, we recently released a toolkit for meaningful consumer engagement and a survey of consumer provisions in health plans participating in state-based demonstration projects to provide integrated, high-quality care to those dually eligible for both Medicare and Medicaid. We are also engaging leaders in the health care community to collaborate and share knowledge with advocacy organizations, while exposing these leaders to the advocacy and policy-making expertise of consumer advocates.
In his keynote speech, Donald Berwick, president emeritus and senior fellow at the Institute for Healthcare Improvement, underlined the critical need for the center’s mission. He stated, “We lack balance in listening to the voices of patients, families, and communities with respect to the design of the care that’s supposed to help them. We have enormous evidence, overwhelming scientific evidence, that when people can control their own care, the care gets better, and generally—by the way—the costs fall dramatically.”
Berwick called on the audience to think about health in the context of communities, beyond the traditional enclaves of the health care system, saying, “The new news is that to achieve health and justice, we have to reconsider and redesign the very fabric of what we call health care today.”
The themes raised in Berwick’s talk and encapsulated in the center’s priorities were reflected in a short video featuring consumers who spoke about challenges they have faced in the current health care system, and what better consumer-centered care has meant for them.
A panel discussion at the launch featured John Arnold, project director for UHCAN Ohio; Amy Berman, senior program officer for The John A. Hartford Foundation; Stuart Butler, senior fellow at the Brookings Institution; Robert Crittenden, senior policy adviser on health care in the office of Washington Gov. Jay Inslee (D); and L. Toni Lewis, international vice president and chair of SEIU Healthcare. The panelists talked about what is needed to make consumer-centered care a reality for everyone. An animated discussion covered the role that markets would need to play, the predicted impact on the health care workforce, opportunities for states and the federal government, and the critical need for consumer voices—particularly from disadvantaged and vulnerable communities.
Butler emphasized the importance of empowering communities and community institutions, such as families, churches, and senior villages. A self-described “nice conservative,” he discussed his work in the context of his interest in the structures that are necessary for people to be successful in life. He said that these include “the education system, the health system, social services, community housing, and how we can better integrate those together, so that not only can people have better health, but also more opportunity to move up the economic ladder.”
Berman described her dual role, both as a staffer at The John A. Hartford Foundation, where she works to advance health system design that better serves the needs of older Americans, and as a person with terminal breast cancer. She described how, as an engaged patient, she has directed her care in a way that has allowed her to feel well. Along the way, she estimates, she has saved her insurer about a million dollars by avoiding care that she did not want!
Berman ended the panel with a statement that perfectly captures the purpose of the center. She said, “We live in a pre-Copernican model where all of the planets float around the health care system; the patient is just one of them. What we need is a shift …an entirely new frame, and this will shift everything when we do it….We need the person at the center. We need to put the sun where it belongs.”
I could not have said it better.