The Informed Consumer: Self-Care, Self-Help, and Selecting Health Care

Chairperson:

Edward Madara, American & N.J. Self-Help Clearinghouses, Northwest Covenant Medical Center

Panelists:

Bob Bureau, Resource Development Director, National Empowerment Center

Carol Cronin, Senior Vice President, Health Pages

Linda K. Shelton, Director of Consumer Projects, National Committee for Quality Assurance

• STATEMENT OF THE SUBJECT

The growth of both the self-care and self-help group movements reflects the increasing determination of Americans to be active participants in improving their their own health and in choosing the most appropriate healthcare services as needed. Such efforts promote self-directed approaches that encourage self-responsibility, support positive lifestyle changes, enhance quality of life, and help reduce health care expenditures. However, professionals have traditionally worked within a healthcare system of resources, power, social, and organizational structures that have served to limit consumer and patient access to information and to restrict the individual's ability to make informed choices.

• KEY ISSUES, INCLUDING THE ROLE OF TECHNOLOGY

Given increasing consumer empowerment and choice, how will consumers be supported by or partner with other sectors? How will they become more informed? What type and amount of information do they want? How will they tap the emerging information technologies, databases, and electronic tools to support their self-care skills and learning, and their needs for practical information, support and empowerment? With increasing reliance on the Internet, how will universal access and computer education be provided? With increased recognition of the value of Total Quality Management (TQM) and Continuous Quality Improvement (CQI), and moves to "reinvent government," how will these healthcare "customers" become involved in evaluating, advocating for, overseeing the improvement of, or actually participating in service delivery?

• ROLES, RESPONSIBILITIES, AND PRIORITIES OF KEY SECTORS

1. Consumers: bring a healthy skepticism to the process of healthcare planning and service delivery. . Consumers are increasingly accessing and disseminating self-care and self-help resources, as well as sharing good and bad experiences with healthcare systems, via the Internet. Quality healthcare is more caring and effective when driven by consumer customer needs.

2. Member-run self-help support groups and consumer-operated services represent a significant option for specific populations, i.e. those who can use the Internet.

3. Technical rating organizations: support consumers with accreditation reports, related standards compliance, survey and study results, report cards, and other expert professional measures.

4. Information providers: support consumers with information on illness prevention and on treatment options, healthcare plan analyses, customer satisfaction survey results, and information on services and prices.

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