Information infrastructure for consumer health: a health information exchange stakeholder study.

BACKGROUND: An enabling infrastructure for population-wide health information capture and transfer is beginning to emerge in the U.S. However, the essential infrastructure component that is still missing is effective health information exchange (HIE). Health record banks (HRBs) are one of several possible approaches to achieving HIE. Is the approach viable? If so, what requirements must be satisfied in order for it to succeed? PURPOSE: The research, conducted in 2007-2008, explored HRB-related interests, concerns, benefits, payment preferences, design requirements, value propositions, and challenges for 12 healthcare stakeholder groups and the consumers they serve in a U.S. metropolitan area of 1.3 million people. METHODS: A mixed-methods design was developed in a community action research context. Data were gathered and analyzed through 23 focus groups, 13 web surveys, a consumer phone survey (nonstratified random sample) and follow-up meetings. Recruiting goals for leaders representing targeted groups were achieved using a multi-channel communications strategy. Key themes were identified through data triangulation. Then, requirements, value propositions and challenges were developed through iterative processes of interaction with community members. RESULTS: Results include key themes, design requirements, value propositions, and challenges for 12 stakeholder groups and consumers. CONCLUSIONS: The research provides a framework for developing a consumer permission-driven, financially sustainable, community HRB model. However, for such a model to flourish, it will need to be part of a nationwide network of HIEs with compatible HRB approaches able to overcome a number of challenges.

Building a community network for a cancer education/screening program: the process and lessons learned (or relearned).

Similar to many communities around the United States in the late 1990s, Muncie, Indiana, and the surrounding county created a year 2000 committee, called, "You and Year 2000, Inc.: The Muncie and Delaware County Millennium Project" to sponsor, plan, and conduct activities to celebrate the new millennium and ponder the community's past, present, and path to the future. Part of the Committee's planning was to create a legacy of the year-long celebration that would attack a community problem. Partnering with the local hospital, the Committee decided to attack the problem of cancer through a fund-raising campaign to build a cancer center and cancer education/screening program. The purpose of this article is to describe the application of a community organizing/building model used to create a community-wide cancer education/screening program and share the lessons learned (or relearned). The planning process used to develop the education/screening program is one that could be duplicated elsewhere.