even though it is the most powerful planning tool of the HSA. Use HSA board meetings to communicate their concerns. Meetings are held every quarter in some HSAs every month at which consumers can exchange ideas with the agency staff and board members. In practice, these meetings at which the entire board rather than a single officer is present can be more effective than public hearings. Board members can listen and respond di rectly to consumers in meetings allowing open exchange. There are some problems involved in treating board meetings as public forums. Notice of board meetings is required but left to local discretion. Consumer participation is sometimes ignored or treated as an "intrusion" on the board. The aura of a business meeting, much like the formal atmosphere of a public hearing, might deter participation. In addition, experience shows that neither HSA boards nor staffs are prepared to make meetings participatory. In one agency, for example, the meeting place was changed without notifying anyone but board members and staff. In another, agendas were prepared only for the board members and staff, leaving concerned consumers without essential information. In yet another, an inquisitive consumer was asked to stop disrupting the meeting. Consumers might also seek out sympathetic board members and use them as liaisons. It is up to consumers to remind board members and staff that consumer participation is required at meetings. Consumers should remember that they elect the board and the board should be responsive to them. In order for board meetings to be an effective way for citizens to participate, board members must be sympathetic to consumer interests. A consumer-oriented board is no substitute for direct public participation, but it is an important step in improving health care planning. PUBLIC Health Planning Boards and Committees Previous efforts in health care planning have generally failed to involve consumers in the planning process. PL 93-641 aims to overcome these failures. It specifies that all HSA governing boards and SACs be composed of at least 51 percent but not more than 60 percent consumers who are residents of the area. These consumers must be "broadly representative" of the social, economic, and racial characteristics of the population. Agencies not complying with these requirements can lose their designation. In Texas ACORN v. Texas Area V Health Systems Agency, for example, the courts ruled in favor of the consumer advocacy group which filed suit against the local HSA because its board was grossly unrepresentative of the area population and of low income people in particular. A recent study for the Bureau of Health Planning and Resources Development finds that HSA governing boards generally conform to PL 93641 regarding consumer and minority representation but not regarding women and those with low occupational status. Despite this finding, most boards remain provider-dominated. One reason for this is in the flexibility of the law. Because the requirements are so general in nature, those influential in forming an HSA most of whom are providers - strongly influence its direction and exercise control. An examination of HSAS shows a consistent pattern of provider domination even with a majority of consumers on the board. Most agencies maximize provider representation and keep consumer representation at a minimum. Limiting consumers to a simple majority becomes a crucial factor when decisions are made. Consumers are absent from meetings more often than providers whose attendance is often part of their jobs. The resulting majority of those at meetings is often providers. It is not surprising that providers are elected to lead the different standing committees of the board. In addition, providers frequently load HSA elections with provider-oriented consumers. For example, the Los Angeles HSA actively sought community participation in a recent election through neighborhood meetings and SACS. Local medical societies and hospitals mounted a successful effort to pack the voting membership with providers. Providers ran slates of provider-oriented consumers and were easily victorious. Open elections can promote HSA accountability and participation, but the process can also be manipulated by vested interests. But consumer-oriented HSAS do exist. In suburban Cook-DuPage County, Illinois, consumers organized early and applied for designation as the local HSA. Despite a competing application submitted by providers, the consumer application was approved by HEW. The consumer victory was aided by HEW, the Governor of Illinois, and the state health agencies after consumers threatened litigation and adverse press coverage if there was a decision favoring providers. Since its designation, the agency has bolstered consumer participation by adopting progressive bylaws and hiring five full-time consumer coordinators. The lesson is that only through active participation and organization can consumers benefit from the flexibility of the law. The North Central Connecticut HSA also seeks to assure active consumer participation. This area is comprised of thirty-eight towns divided into six Sub-Area Councils open to all local residents. Town members elect a sub-area executive committee with balanced representation of consumers, providers, and public officials. Committee members then elect HSA board members who regularly report back to their subarea and thus are held locally accountable. Basic changes in PL 93-641 are needed to ensure consumer participation elsewhere. But the reality of health politics suggests that needed legislative changes will not be easy to achieve. In the absence of major changes in the law, however, there are several things consumers can do to make HSA boards and committees more democratic and responsive to local needs. Consumers should: Be involved from the earliest stages of HSA planning and politics. The Suburban Cook-DuPage County HSA represents an excellent example of why this is important. Because this HSA is consumer oriented, a constant effort is made to keep consumers L involved and informed without ignoring providers. Endorse and elect candidates to the board and then seek to become officers and heads of committees. The Cape Cod Coalition organized consumers in Fall, 1976, to vote for board members of the sub-area council health planning agency for Cape Cod. The Coalition recruited and endorsed twenty-four candidates for the thirty positions. Seventeen were elected. Review and improve the HSA bylaws. Only through changes in the bylaws of each HSA can consumers begin to turn the tide Increase consumer attendance and neutralize higher attend- Ensure that consumers occupy positions of power on the Ensure that elections are open and honest. HSAS could de- Guarantee that consumer representatives are neither providers nor provider-oriented consumers. HSAS could require an application with questions to determine the actual status. HSAS could also require that consumers only vote for consumers and providers for providers in elections. Prevent provider-dominated voting at board meetings. The Consumers must watch for HSA compliance on board composi- Once consumers get moving on HSA boards, they will be able to decide on policies in the interests of consumers. One important direction to take is to create a public information program aimed at consum ers. Getting the Information You Need Consumers often lack the information they need about health issues and health planning. Either they are unaware of their rights as patients, or they do not know about important aspects of the health system, or they lack access to crucial information. PL 93-641 requires HSAs to make information available to the public. But most HSAs do not effectively distribute their information to the public. Either their priorities lie elsewhere or publications are written in terms only a person with a medical background can understand, or they are obscurely shelved in public libraries. Health planning information is not readily available to the public. Consumers should pressure HSAs to make health planning information more widely available. HSAS should be expected to: Identify and publicize the goals of the HSA. PL 93-641 outlines four goals for HSAs: • Increase the accessibility, acceptability, continuity and quality of health care • Restrain increases in the cost of providing health services • Provide services directed toward the prevention of illnesses Various techniques for reaching the intended audience should be used. Some of the more popular techniques which have worked well in the past are: |