Welcome to this inaugural issue of the ATHN report, your source for the most up-to-date news and information about ATHN’s efforts to advance and improve the care of individuals affected by bleeding and thrombotic disorders. Each issue of the ATHN report will report on ATHN’s progress towards its strategic goals and how its affiliates and the patients they serve participate in and benefit from ATHN’s efforts to ensure higher quality, more accessible data for the hemostasis and thrombosis community.

We want to take this opportunity to thank Novo Nordisk, Inc. and CDC for their generous and continuing support of ATHN’s vision, mission and values. The founding and sustaining capital provided through the unrestricted grant from Novo Nordisk and ongoing collaboration with the CDC Division of Blood Disorders helped make ATHN’s first year milestones a reality and will enable ATHN to focus on its strategic directions going forward. <read more>

Mid-September 2007 witnessed the successful launch of the ATHN Affiliate program, a consortium of federally-funded hemophilia treatment centers (HTCs) that share the vision, mission and values of ATHN, and commit to collecting data for this community. To date, over 30% of HTCs (42 of the 134) have signed Affiliate agreements with ATHN. <read more>

ATHN Affiliates will enjoy tangible benefits, especially in the area of data manager support, that enable them to spend more time providing safe, quality care to their patients. <read more>

As the new year rang in on January 1st, so did the new ATHN Board of Directors for 2008. ATHN welcomes five new board members this year and 12 more who continue their service from 2007.

Among its first key actions in the new year, the Board adopted the strategic plan for 2008. The plan lays out five strategic directions, each with detailed milestones.<read more>

In 2007, the CDC awarded ATHN a two-year cooperative agreement to develop and implement a National Preparedness Plan to help HTCs minimize patient morbidity and mortality related to a disaster. This plan is central to the data management strategy of ATHN’s 2008 strategic plan and, in essence, helps operationalize NHF’s emergency preparedness recommendations. <read more>

With One Voice

ATHN is working to help clarify many of the confusing terms used when discussing data and specifically health data and healthcare technology. These two words often get confused. They address related but different issues. Simple definitions to help:

Privacy: Protection of patient health information due to its sensitive and confidential nature

Security: The means by which an organization ensures the confidentiality and integrity of that information.

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.<read more>

In mid-October, ATHN initiated an e-survey on its website, polling HTCs about data manager issues to help us understand HTC data management needs and how we can best support data collection efforts. Specifically, the survey sought to

• Assess the current state of data collection and use;
• Facilitate improved data collection; and
• Develop a fact base to provide data manager funding/support to HTCs.