A community-based partnership to promote information infrastructure for bleeding disorders. Am J Prev Med 2011 Dec;41(6 Suppl 4):S332-7
Date
12/07/2011Pubmed ID
22099355DOI
10.1016/j.amepre.2011.09.018Scopus ID
2-s2.0-81355132185 (requires institutional sign-in at Scopus site) 11 CitationsAbstract
Specialists in rare disorders often face challenges in collecting surveillance and research data. As movement toward more fully realizing the potential of electronic health information gains momentum, practitioners who treat individuals with rare disorders are in need of public-private support to tap into the advantages offered by the developing electronic information technologies and the interoperability standards promulgated by the USDHHS. The not-for-profit American Thrombosis and Hemostasis Network (ATHN) was created in 2006 to provide stewardship of a secure, national, web-based database to support federally funded hemophilia treatment centers (HTCs) across the country. In pursuit of its mission to support clinical outcomes analysis, research, advocacy, and public health reporting in the hemostasis and thrombosis community, ATHN has established a spectrum of community-based partnerships. This paper describes the process and public health benefits of creating formal relationships with 127 of the 134 HTCs from 12 regional networks across the U.S., government agencies such as the CDC, Health Resources and Services Administration, and NIH; consumer-based organizations; and industry leaders. This community-based partnership model can be applied to other rare disorders communities with high economic and public health impact.
Author List
Aschman DJ, Abshire TC, Shapiro AD, Lusher JM, Forsberg AD, Kulkarni RAuthor
Thomas Abshire MD Emeritus Professor in the Pediatrics department at Medical College of WisconsinMESH terms used to index this publication - Major topics in bold
Ambulatory Care FacilitiesBlood Coagulation Disorders
Community Networks
Humans
Information Services
Public Health
Public-Private Sector Partnerships
