Consumer Advocacy for Transformation

Consumer health advocates have made great strides to improve access to health coverage. However, there is still much work to be done. Both out-of-pocket and premium costs have the potential to limit access to care, along with other barriers, and even though the United States spends more on health care per capita than any other country, our population’s health status and outcomes are worse than those of most other countries. Consumer health advocates have an opportunity to engage in efforts to build a better health system that produces good outcomes, reduces or eliminates persistent health disparities and helps people live healthier lives.

Community Catalyst’s Consumer Advocacy for Transformation project supports state and local non-lobbying advocacy efforts to pursue policy and health system changes that aim to develop and insert an organized, influential and permanent consumer voice in state and local health systems. The two-year grants will support projects that are part of a larger effort to increase health care value by ensuring access to care, improving health outcomes and lowering costs. Changes are already underway at the federal level to make the cost of health care more sustainable while improving quality, and much of the work and innovation will happen, and is already happening, at the state policy and local delivery system levels. We believe that the strong voice of consumers and communities – particularly those with disproportionately poor health outcomes – will be critical for achieving a higher-value, more patient-centered health care system. 

Our Partners


Alabama Arise is a statewide nonprofit, nonpartisan coalition promoting public policies that improve the lives of low-income Alabamians. Arise members comprise groups and individuals across the state who are united in the belief that their most vulnerable neighbors are hurt when bad policy decisions are made in Montgomery and Washington. Over the years, Arise has become a “go-to” policy and advocacy organization on health care reform for media, state officials, peer organizations and the public. Some of the areas the group focuses on besides health care include: tax reform; adequate state budgets; affordable housing; fair lending; death penalty reform; and public transportation.

With this project, Alabama Arise aims to build awareness and increase the effectiveness of consumer liaisons to Medicaid programs by linking them to a sustainable feedback network of grassroots organizers, caregivers, and consumer advocates. The project focuses on engaging consumers on Medicaid reforms and will strengthen consumer participation in program design by recruiting and equipping consumer representatives to shape new models of care as the state rethinks its Medicaid transformation strategy. The project will build and support a grassroots feedback network to expand the capacity of consumer representatives to assess and report meaningfully on patient experience in health care delivery, and offer providers and payers a conduit for “field-testing” proposed service enhancements and policy changes aimed at aligning quality, cost and efficiency and improving patient experience.


Health Access is the California-wide health care consumer advocacy coalition with a diverse membership of community and constituency organizations as well as significant policy, research, organizing, communications, and public education expertise. The organization represents both insured and uninsured health care consumers, working to secure and expand coverage for all, protect patients, control costs and improve quality, value, and equity, and encourage a healthier California.

The California Pan-Ethnic Health Network is a multicultural health organization that promotes health equity by advocating for public policies and sufficient resources to address the health needs of communities of color. They seek to improve access to affordable health care, advance the integration of cultural and linguistic competency into health care, promote social and environmental conditions that will benefit communities of color, and address disparities in access, utilization, and outcomes among racial, ethnic, and language groups.

This project seeks to better address the holistic health needs of individual consumers, reduce health disparities, and improve health outcomes for all Californians The project focuses on care provided to Californians served by Medicaid (Medi-Cal), the Exchange (Covered California) and county-based health systems and safety-net programs. Specific goals are to increase access and utilization of primary care and medical homes and better integrate physical, oral, and mental health care, and to improve metrics and accountability for health equity and outcomes, including for physical, oral, and mental health care.


The Colorado Consumer Health Initiative (CCHI) is a nonprofit, consumer-oriented, membership-based health care advocacy organization that seeks to build a cohesive consumer voice among health advocacy organizations in order to improve health care in Colorado. CCHI acts as a watchdog to serve as a counterweight to powerful health care systems and interests in order to ensure that health policies represent consumer interests.

CCHI will partner with the Colorado Center on Law and Policy and the Colorado Cross-Disability Coalition on its project. This project will increase advocacy capacity to sustain an organized and influential grassroots consumer voice, which is necessary to ensure high quality care as Colorado restructures its Medicaid payment and delivery system reform effort, the Accountable Care Collaborative (ACC). Specifically, this project will recruit, train, and provide ongoing support to Medicaid enrollees to participate in regional and statewide Program Improvement Advisory Councils (PIACs). This project will also sustain a vigilant advocacy community with a network of organizations that can undertake policy analysis and systems advocacy to improve consumer participation and outcomes in the ACC. Further, this project will help establish a foundation of informed consumers who can engage in payment reform changes to protect their own interests over the long term.


Idaho Voices for Children (Voices) seeks to develop a state-level unified policy agenda that targets child health, education, safety, and family economic security. Voices conducts policy research; develops statewide infrastructure; promotes and advocates policies, education and awareness; and coordinates statewide coalitions and networks.

Voices’ project proposes to improve care and address disparities and inequities within Idaho’s system for adults and children in need of behavioral health care. The proposed project will convene consumers and stakeholders to form a new behavioral health advocacy network and strengthen the capacity, skills, and knowledge of consumers and consumer advocate groups to engage in behavioral health system transformation. Voices will coordinate and lead an advocacy campaign focused on integrating behavioral and primary health systems, and work to maintain and/or increase comprehensive health coverage for vulnerable populations, creating access to mental health and substance abuse treatment services.

Idaho Voices for Children is a program of Jannus, Inc., a multi-service nonprofit organization that hosts over 20 programs related to community health, economic opportunity and public policy.


The North Carolina Justice Center (NCJC) is a research and advocacy organization that seeks to eliminate poverty in North Carolina by ensuring that every household has access to the services, resources, and fair treatment it needs to achieve economic security. Through their Health Advocacy Project (HAP), NCJC works towards ensuring access to high quality and affordable health care, especially for underserved populations, such as racial and ethnic minorities, those in rural communities, and those with low incomes. Its goal is to secure health care policies that prioritize consumer needs and well-being.

There are major changes underway for key health programs (Medicaid and CHIP) in North Carolina. With this project, NCJC’s goal is to improve access to quality and timely care, while also eliminating the coverage gap, in order to produce measurable health outcomes that will reward smart investments and advance health equity. NCJC will mobilize and educate a network of consumers through communications, grassroots engagement, and partnerships, to build a sustainable consumer-led infrastructure in order to shape Medicaid transformation. They also aim to develop a data collection, monitoring, and reporting system to track and identify progress and barriers to Medicaid reform. Finally, they will develop and pursue a policy and regulatory agenda to improve healthcare value and health equity while minimizing disruption and reducing barriers to access.


Pennsylvania Health Access Network (PHAN) is a consumer driven organization focused on making the health care system more affordable and accessible to all Pennsylvanians by expanding access to and improving the quality of the state’s health coverage options. PHAN trains and educates consumer, advocates, providers, and organizations on health policy issues and the social determinants of health and provides technical assistance.

The proposed project will elevate consumer voices as Pennsylvania accelerates its use of Medicaid managed care to control spending. PHAN will work to implement consumer protections in value-based purchasing (VBP) that support greater quality and efficiency for both consumers and providers; create network adequacy standards for managed care contracts for home and community based services where providers travel to consumers; and secure support for housing-related supports in Medicaid. PHAN will increase consumer participation at state policymaking tables by building the capacity of key community organizations to participate in health system transformation work. This project seeks to build a statewide consumer driven coalition that will engage in health system transformation work; increase awareness among policymakers, the public, and the media about the need for the consumer voice in health system transformation; empower a base of engaged consumers to advocate for a consumer-driven agenda and increase engagement between policymakers and consumer.


The Tennessee Disability Coalition (TDC) is an alliance of organizations and individuals working together to affect system change on behalf of individuals with disabilities as well as their families. Its member organizations and community members represent Tennesseans of every age, economic background, political persuasion and disability.

In 2016 the state implemented an 1115 waiver amendment to consolidate its program of Medicaid home- and community-based services (HCBS) into the state’s capitated Medicaid program, TennCare. Through the integration of long-term services and supports (LTSS) and medical services and the realignment of financial incentives, the capitation of intellectual disability/developmental disability (ID/DD) services is meant to significantly improve the quality, efficiency and reach of services for this highly vulnerable, underserved population. However, this will not be successful unless the plans in the program understand the needs of people with ID/DD and how to meet them. In their project, TDC will organize and implement family- and consumer-based advocacy to shape policies and practices in Tennessee’s system of LTSS for people with ID/DD. The project’s goals are to provide training and support for family and consumer leaders serving on managed care organizations (MCOs) and TennCare advisory councils and engaging in grassroots organizing of consumers and families. TDC will also conduct policy analysis and direct advocacy efforts at systems change.


West Virginians for Affordable Health Care (WVAHC) represents the interests of consumers on health care issues. Its goal is to bring a consumer voice to public policy, allowing every West Virginian to advocate for quality, affordable health care and the opportunity to lead an informed, healthy and productive life. The organization’s policy goals include: preserving, protecting, and improving Medicaid and Medicare; promoting quality, affordable care for children and supporting health equity.

West Virginia has a strong record of enrollment of children in Medicaid and CHIP, with almost universal coverage of children. However, budget cuts to Medicaid could threaten this success if new, low-cost outreach and enrollment strategies are not put into place. At the same time, a growing population of children in disrupted families and children in transition is creating new enrollment challenges. In this context, this project focuses on three goals: 1) engaging parents, schools and providers in strengthening and expanding schools’ capacity to identify student insurance status and establish efficient links between schools and local health providers; 2) bring a local consumer voice to the development of new alternative health service models for children in the school system by ensuring each child has a medical home and timely delivery of a full array of social and health care services for all children; and 3) engaging the public and consumers in ensuring strong Medicaid and CHIP programs and maintaining the gains made in health insurance coverage.


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