The inequities and exclusions of the U.S. health care system are well known, but the two prevailing strategies in health law and policy—privatization and technocracy—both fail to address disparities in power that produce health injustices. To advance health justice and uphold democracy, there is a tremendous need not only for policies like Medicare for All that guarantee health care as a public good, but also, as Alicia Ely Yamin and Tara Boghosian wrote in a recent LPE Blog post and as I discuss in an article in the Journal of Law, Medicine & Ethics, policies and strategies that radically redistribute decision-making power and increase accountability. Redistributing decision-making power and increasing accountability requires legal strategies to design, implement, test, and adapt participatory governance mechanisms throughout health care and other sectors in coordination with organizing strategies to build political will.
Privatization and technocracy deny patients and health care workers the ability to make personal and professional decisions about treatment, and deny the public the ability to make fundamental political decisions about who and what we value as a society and how we want to allocate our shared resources. They remove decisions about how we prioritize, finance, price, and ration care from the public sphere by turning them over to unaccountable health care corporations, employers, professional associations, consultants, and heads of public agencies. Even though technocracy acknowledges and attempts to tame and cushion against markets’ worst abuses, it fails to contend with the disparities of power that produce health inequities.
To advance health justice, we need multiple pathways through which everyday people—acting both as individuals and also as member-led associations of patients, families, health care workers, and members of the public—can meaningfully shape governance and advance accountability by contesting over real levers of power. Many possible legal mechanisms incorporate empowered participatory decision-making and accountability into health governance. Here, I explore five mechanisms that hold especially exciting potential:
- Participatory health needs assessments (PHNAs) are a policy model built on participatory research methods. Community and labor organizations widely use PHNAs to qualitatively and quantitatively document people’s needs and priorities. The Affordable Care Act’s community health needs assessments and local public health departments’ health impact assessments provide already-existing, though imperfect, models. We can build on these already models to center bottom-up leadership and require budgets and policies to meet communities’ self-identified needs.
- Participatory budgeting has been introduced in cities and counties around the country to enable local residents to determine how to allocate portions of their public budgets. These processes have been widely successful, but could expand to more locales and larger portions of budgets, enable the public to vote on raising tax revenues in addition to allocating expenditures, incorporate stronger requirements to advance health equity, and require public and private health systems to institute participatory budgeting in their community health programs.
- Participatory monitoring and enforcement, such as the Coalition of Immokalee Workers’ Fair Food Program, shifts monitoring and enforcement powers from far-off regulators and courts to the people who are closest to problems. Participatory monitoring and enforcement could be introduced into health governance to entrust designated patient, worker, or community organizations with legal enforcement powers to protect people against neglect and abuse by corporations and government agencies.
- Public advocates, like Connecticut’s Office of the Healthcare Advocate and Nevada’s Office for Consumer Health Assistance, are widely respected for assisting individual patients struggling to contest decisions by health care companies or state agencies and for advocating for patients at large in legislative, regulatory, and judicial processes. A wave of advocates was created in the 1970s to protect people from utility companies, and the time may be right for a new wave of public advocates to rebalance power in the health care system.
- Citizen juries are mini-publics selected through lottery who are asked to stand in for the public at large in considering thorny policy issues and making recommendations to legislatures and the public. They are well-suited to offer guidance on policy impasses like assisted suicide, organ transplant, and vaccine prioritization that arise not so much because of competing material interests, but because different values that people hold are in tension—such as liberty and equality or present and future value—and thus prevent the public from arriving at a majority agreement.
It is important to note that when participatory models have been introduced, they haven’t always succeeded. In the 1960s and 1970s, the Civil Rights, Black Power and Welfare Rights movements won legislation creating Community Action Agencies and Community Action Programs, state and local health planning 314(b) agencies, and Health Systems Agencies to bring everyday people, especially poor and working-class Black and brown people, into participatory health governance. These initiatives met both challenges and success, but were all dismantled as problems arose within the design of the models and as the larger neoliberal backlash to civil rights and activist government grew.
Evidence from historic and current participatory governance models strongly suggests that, to succeed in advancing health, economic, and racial justice, participatory governance mechanisms must be explicitly committed to goals of advancing heath equity and redistributing democratic control and self-determination. Participatory governance models must also be well-resourced; backed by supporters within government, institutionalized within larger policymaking and enforcement processes; granted real, enforceable decision-making power; adapted to local context while held accountable to universal standards; and actively engaged with authentically representative community and worker organizations throughout the full cycle of agenda setting, decision-making, and monitoring and enforcement.
In contrast to proponents of deliberative democracy—who hold that creating space for deliberation between everyday people will produce just, rational outcomes on its own—I contend that people must be recognized as members of social groups, not just as individuals. Deliberative processes must therefore be embedded within larger structures that intentionally correct imbalances in power between groups; that help under-organized groups like patients, health care workers, and communities of color organize and contest over real levers of power; and that flatten the terrain of contestation.
Even so, many questions remain about how to best to replicate, scale, institutionalize, and adapt participatory mechanisms across sectors, levels of governments, geographies, and communities. Participation is, of course, the best way to determine which participatory processes are best suited to health coverage, financing, pricing, facilities, education, and other areas of health governance.
Cross-sectoral collaborations are necessary to articulate visions, clarify goals, theorize possibilities, and iteratively build a real democracy piece by piece by piece. There is thus tremendous opportunity for a movement law approach in which legal scholars and public interest lawyers collaborate with Black, Indigenous, health justice, solidarity economy and other grassroots movements, policy and advocacy organizations, elected officials, and civil servants. Only together can we imagine and build new structures that give everyday people, both as individuals and collectivities, the power to authentically shape the decisions that affect our lives.