I Heard it on the Great Line: Towards Health Information for Everyone

Chairperson:

Linda Neuhauser, University of California, Berkeley

Panelists:

Joe Hoyt, California Alliance of Information and Referral Services

Patricia Perez Kornowski, California WIC Program

Jessica Torres, LatinoNet

• STATEMENT OF THE SUBJECT

In this session we will discuss the need to make health information available to everyone, especially under served groups. We will explore ways to develop partnerships which can effectively use innovative technologies to reach this goal. Three large-scale models of health information systems will be presented, with an emphasis on the many obstacles overcome at the state or national levels.

• KEY ISSUES, INCLUDING THE ROLE OF TECHNOLOGY

During the 1990s and into the foreseeable future, health care provision will be rapidly changing. Because of escalating costs, prevention and self-care approaches will become essential. As a result, there is an increasing need to develop health information systems which can inform everyone about health care information, options, and services.

Achieving this vision on a national level poses daunting technical, political, and financial challenges. At present, no one public or private sector group possesses the required funds, technical abilities, or "people networking" to make this happen. Therefore, the first step will be to establish strong multidisciplinary, multisectoral partnerships between government agencies, community groups, universities, and corporations. These partnerships will need flexible approaches to securing short and long-term funding and the ability to search out and tie together existing databases seamlessly.

The second step will be to develop health information systems which are both physically accessible to the public and relevant in terms of information and format. Currently there are many "underserved" populations in the U.S. who do not have access to or training on computers, or live in rural areas away from key online services. "Front end" access will need to organize the information in a way that is user-friendly, culturally and linguistically relevant, and that offers practical points of access.

• ROLES, RESPONSIBILITIES, AND PRIORITIES OF KEY SECTORS

The third step will be to involve the users in an ongoing process of design, testing, continuous enhancements, and effective promotion of the system so that people can learn how to access and use it. Several innovative models will be presented in this panel:

1. The Wellness Guide Project of the University of California at Berkeley has developed statewide health promotion documents now distributed to over 1 million low-income families in California. The project also partnered with telephone companies and information specialists to develop standardized listings of health and human service information in phone books. The Wellness Guide (in English and Spanish) and the telephone service listings now form a powerful "front end" information system which will be adapted for online use.

2. The California Alliance of Information and Referral Services (CAIRS) is developing a statewide database of health and human services. The statewide system will link hundreds of databases around the state. Ultimately, the links will be seamless. Once completed, the system is expected to be widely available though social service organizations, HMOs, libraries, and corporations.

3. The Womens, Infant, and Childrens Special Nutrition Program (WIC) in California is automating program information through the newly developed "ISIS" program. This provides a major opportunity to provide health information to the 1 million families WIC serves. WIC is partnering with the Wellness Guide Project and CAIRS to develop a health and human service information system. Once completed, service providers will have direct online access to service information and clients can receive a printout about relevant local services.

4. LatinoNet built a network of information for Hispanic users. Having successfully completed its demonstration phase in California, LatinoNet's "grassroots" information system is now available online nationally. In addition to expanding its audience, LatinoNet is establishing a network of regional field representatives who work with Latino organizations in 10 communities to facilitate their participation in this service.

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