If You’re Not at the Table, You’re on the Menu

Nov 25, 2014, 11:03 AM, Posted by

A diabetes patient, Toni Martin, who participates in Pathways to Health a self management group.

I hear the phrase in the title used a lot when people talk about the important role advocacy plays in health policy-making, and it’s very appropriate. But there is one voice often missing in the conversation about how to fix the way we deliver, pay for, and think about health care: Consumers, the very people the system is designed to help. We must make sure that the people at the center of the health care system have a say in how it changes.

Like many of you, I read a lot about what’s broken. Prices are too high, costs aren’t clear, and a lot of procedures may not help patients. Sometimes they even hurt. Furthermore, a lot of what determines our health happens outside of the hospital and doctor’s office. But how can we—patients, doctors, nurses, employers, foundation, nonprofits, and others—connect those factors to health care? At the Robert Wood Johnson Foundation (RWJF), we know that in order to build a Culture of Health, we must rid our health care system of wasteful spending and ensure that everyone has access to quality, affordable health care.

In New Orleans last year, consumer advocates met and discussed the challenges of—and opportunities for—finding systematic ways of ensuring that consumers' concerns are reflected in health policy conversations. Providers, insurers, and employers are all looking at how to deliver better care and pay for care differently, but organizations that represent consumers also need to be at the table, in an organized and sustained way. That table might be a policy-making table, such as a state health department, or it might be the table at a board room in a hospital system.

To help meet this need, RWJF recently awarded a grant to Consumers Union to create an information hub for consumer advocates who are addressing health care value issues. The hub’s purpose is to support and connect consumer advocates across the U.S., arm them with comprehensive fact-based information, and help them advocate for change. Beginning in March 2014, the hub will include a website that houses material that advocates need when entering into health policy conversations, such as short issue briefs that help put emerging research into context, and relevant material from other sources, consolidated in one place.

Just as important—what happens offline. The hub will connect advocates to one another, as well as to subject matter experts, to make sure they take advantage of what others are learning.

In order to support health care value advocates at the state or local level, the Foundation will issue a request for proposals (RFP) to fund a limited number of advocacy coalitions that will pursue policies and systems changes that increase value. These efforts could include a range of agendas, such as payment reform, or linking population health with the health care system. We will work with Community Catalyst, a leader in supporting state and local consumer health advocacy work, to manage this grant-making effort and provide technical assistance across a range of advocacy capacities. Community Catalyst has worked for years with RWJF and other foundations to guide large-scale advocacy efforts; their deep bench of experts will be a great asset as we support consumer advocates. Organizations will receive an invitation to submit a letter of intent (LOI) to apply for funding in December 2014. Based on the LOIs, selected organizations will be invited to submit full proposals.

We also expect that the resource hub and grant-making effort will share information and resources, enhancing one another’s efforts. These two organizations, Consumers Union and Community Catalyst, have strong track records in this field, and we are proud to work with them. Over the course of these projects, we hope to see consumer advocates become even more involved in issues of payment and delivery system reform. Our hope is for these issues to continue to become a focus for consumer organizations, and for consumers to have a stronger and more developed voice as more states and region consider how to get better value from our health care dollars.

If you’re a consumer advocate, you don’t need to wait to get involved. Feel free to seek help from Consumers Union in advance of the website launch; advocates can contact Lynn Quincy AT consumer.org. If you would like to ensure that your organization receives an invitation to submit an LOI from Community Catalyst, please register here.

Let us know what you think about our plans by leaving a comment below. What else we should consider? What other approaches we should be pursuing?

David Adler

David Adler, MPA, is a program officer for the Robert Wood Johnson Foundation working to increase the number of Americans with health insurance and improve the value the nation gets for its investments in health and health care. Read his full bio.