Reaching Out To The Community Liaison Group
Collaboration remains central to ATHN’s strategy for helping to ensure electronic compatibility within an increasingly sophisticated public health information infrastructure for blood disorders. To foster collaboration among government agencies, patient organizations and other non-profit entities in the hemostasis and thrombosis community, ATHN formed the Community Liaison Group. The group is charged with advising ATHN’s Board of Directors and facilitating two-way communication between ATHN as well their individual organizations.
The Community Liaison Group held its first meeting on November 29, 2007, in Chapel Hill, North Carolina. Participants included:
- National Hemophilia Foundation (NHF),
- Hemophilia Federation of America (HFA),
- Committee of Ten Thousand (COTT),
- National Alliance for Thrombosis and Thrombophilia (NATT),
- Hemophilia and Thrombosis Research Society (HTRS),
- AntiCoagulation Forum,
- World Federation of Hemophilia (WFH),
- Centers for Disease Control and Prevention (CDC),
- Food and Drug Administration (FDA), and
- National Heart, Lung and Blood Institute (NHLBI).
MCHB, although supportive of ATHN was unable to attend this initial meeting. CDC was represented by both the Division of Blood Disorders as well as the National Center for Public Heath Informatics.
The Community Liaison Group discussed a number of important issues, including the guarantee of data protection, no penalty for non-participating HTCs or patients, models for data access, the need to define thrombosis focus, transparency, community education, involvement of physicians and patients outside the federally funded HTC network, getting industry at the table regarding surveillance, clinical filtering of adverse events and international harmonization.
