Appendix A: Clinical Data Exchange Efforts in the United States: An Overview
Markle Foundation
This Appendix is part of the Data Standards Working Group: Report and Recommendations. It provides a detailed overview of the various community-based electronic data exchange projects that are well underway, summarizing their scope, the challenges they have faced, strategies they have used to overcome challenges, and early achievements.
The overwhelming message we distilled from this overview is that it is not necessarily the technical roadblocks that have most limited opportunities for clinical data exchange – but instead:
- Overcoming the difficulty in bringing diverse stakeholders together towards a common goal, and
- Carefully addressing the need to protect privacy and security; creating the governance models, agreements, policies and practices for building these kinds of exchanges, and
- Building a compelling and sustainable model for devoting ongoing funding, resources and commitment to these projects.
Leadership and vision of a community’s hospitals, physicians, health plans, and public health agencies, combined with the leadership of an effective convener, were common traits in all of the clinical exchange efforts reviewed in this report.
