Transforming The Health Care System

Experience with effective citizen input
in a normally undemocratic part of society

One of the articles in Strategies For Cultural Change (IC#9)
Originally published in Spring 1985 on page 57
Copyright (c)1985, 1997 by Context Institute

Even an entrenched institution like health care, dominated as it is by big business, big government and the AMA, can be affected by citizen action when the channels are available for committed people to work together. Donna Bird lives in Averill Park, NY.

IN THE MID-1970s, during the Ford administration, Congress enacted legislation establishing a national network of regional health planning agencies. Supported by Federal grants, these agencies were created to control rising health care costs, assure improved access to care, prevent unnecessary and wasteful duplication of services, and inform the public about issues affecting the local health care system.

Although professional staff were hired to carry out much of the daily work of the health systems agencies – project review, plan development and implementation, and data management – volunteers were expected to make the agencies’ actual policy decisions. The volunteers serving on the Councils were recruited from the communities served by the agencies, and have been broadly representative of those communities in terms of age, sex, race, income, and education. A majority of these volunteers are consumers of health care, while the balance are providers including physicians, nurses and other practitioners, health insurance specialists, administrators of health care facilities, and the like.

Several presidential administrations and policy shifts later, most states still have health systems agencies. In New York State, the eight HSA’s have survived severe cuts in Federal funding, and cover the shortfall with income from State grants, along with local government and private (generally corporate) contributions. These agencies are involved with the allocation of new, costly technology, with helping financially-ailing hospitals find new roles within the communities they serve, with discouraging the unnecessary expansion of nursing homes and other institutional providers of care, and with encouraging the development of community- based health care services, especially in under-served areas.

For the last six years, I have worked for the Health Systems Agency of Northeastern New York. Our twenty-odd staff members work out of a regional office in Albany and two tiny district offices in Cobleskill to the west and Plattsburgh to the north. Our volunteers, numbering at most times in excess of 200, come from all over the region (some travel three hours to attend monthly meetings!) and include county legislators and hospital administrators, farmers and teachers, bankers and union organizers. Although we experience the same turnover problems as any other organization that places heavy demands on its staff and volunteers, we have remained on the whole a remarkably stable organization, so that many of us have the wisdom of several years’ experience to draw from as we carry out our work.

During my tenure with the Agency, I’ve had dealings with remarkable people of many ages and persuasions, and have learned to understand and appreciate points of view that were decidedly not my own. I have seen this consciousness- expanding process occurring among my volunteers, as well. If you can sit a group of people down in a room together every few weeks, give them an agenda and a project which appeals to their common interests, you – and they – will soon find other common interests, too, and your potential for fostering positive change will rise accordingly.

My own responsibilities have focused on grassroots organizing, first with one, then with two Subarea Advisory Councils comprised of volunteers from Albany and four surrounding counties. These groups – approximately thirty members each – meet monthly to review project proposals from local health care facilities, to discuss Agency-wide policies, and to hear reports on other Agency activities and presentations about change in the health care system. Smaller groups of volunteers may meet together between Council meetings to focus on efforts in a single county or to carry out some specific implementation activity. By asking probing questions, these grassroots volunteer groups have more than once caused the Agency as a whole to reconsider its policies and assumptions. They have particularly challenged the use of numbers-only methodologies to estimate future need for services, arguing that we must also factor in our values, and form a clearer vision of the future toward which we are moving. We are finally beginning to explore those values, as ethical questions about abortion, euthanasia, and, yes, rationing of health care, confront us regularly at our meetings.

This is participatory democracy at its best – stimulating, controversial, at times tedious or conflict-ridden, but always possessed of a core of vitality that keeps us alert and adaptable. Through our volunteer groups, we have encouraged home care agencies serving overlapping areas to meet together and work out coordination agreements. We have recruited physicians to under-served communities and helped small health or human service agencies develop new programs and funding sources. We have been involved in the development of resource directories, and have sponsored conferences on a variety of topics, including the role of business in controlling health care costs, the problem of patients in hospitals awaiting nursing home care, the value of health education and wellness promotion, and alternative futures for the health care system.

Out of the formal structure of HSA staff and volunteers a much less formal, quite extensive support network has grown. These are people who are leaders and decision-makers in their communities, organizations, or professions, who have made a commitment to the future and who are willing to participate to some extent in the HSA’s own unique process for shaping that future. When I respond to the frequently asked question, "What power does your agency really have?" I think of this network, rather than of any authority vested in us by Federal or State statute. For the power to create change lies first with us as individuals. And we can exercise that power to the extent that we choose to. We need to learn about the environment that affects us, and we need to find or build alliances. We need to invest some time and energy in this enterprise, and then, slowly but surely, the changes will happen. A hospital takes the initiative to start a wellness promotion program. A group of health and human service providers in an inner-city neighborhood get together to find out how they can better serve their constituents. County governments ask for technical assistance in setting up offices to coordinate services for the home-bound elderly. Physicians talk openly about the agony of making clinical decisions based on financial constraints. We now serve more nutritious food at our conferences, and volunteers ask for exercise breaks during long meetings. The list of changes grows by the day, and we are helping to make it grow.

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