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.