News & Events

excerpted from CLOT, January/February 2007

ATHN: A Network in the Making

By Diane Aschman, CEO

You may have heard that a new non-profit organization, “ATHN” was formed in July, 2006. You may have even learned what the acronym means. But what exactly does ATHN stand for?  Who is behind it? What is the need that ATHN seeks to address? How can you become involved?  This article will provide you the information to answer these questions.

The American Thrombosis and Hemostasis Network a New Non-Profit

The American Thrombosis and Hemostasis Network (ATHN) was conceived and formed to develop a national database for individuals with bleeding and thrombotic disorders and to provide stewardship for this database. With the impact of disasters such as Katrina fresh in our national psyche, a national database is critical to the protection of information gathered at a local level, and to advance and improve the care for individuals affected with these disorders. Incorporated as a non-profit organization, ATHN embraces five core values.

ATHN CORE VALUES

1. Maintain confidentiality

2. Improve clinical outcomes and care

3. Facilitate continuity of care

4. Foster collaboration

5. Conserve resources through a common infrastructure

Formed to Address Unmet Needs

ATHN was formed in response to nationally identified needs related to bleeding and clotting disorders within the network of federally funded Hemophilia Treatment Centers (HTC's). These needs were articulated during a series of data summits held in 2004-2005 attended by HTC medical staff, consumer and community organization representatives, government agency members, and industry. The lack of a national web based data collection system and oversight agency, the increasing needs for data within a consistent electronic system that allows centers to better manage their patient care and data reporting responsibilities, the need and desire to expand HTC patient populations to include individuals affected with rare coagulation factor deficiencies, women with bleeding disorders, and thrombosis, as well as inability to respond to challenges by public and private insurers about the costs and effectiveness of therapies and the comprehensive hemophilia care model were among the issues raised.  An independent organization that could respond to these issues was perceived as the optimal solution.

Broad Community-based Leadership

Broad community-based leadership – that is one of ATHN’s organizational strengths. The present ATHN Board of Directors reflects the broader hemostasis and thrombosis community with representation of consumers, providers and HTC regions.  Six of its 17 members are physicians providing care at federally funded Hemophilia Treatment Centers. A seventh physician is drawn from outside the HTC network and participates in the CDC pilot project on thrombosis. Included are the immediate

past president and a current board member of HTRS, the Hemostasis and Thrombosis Research Society, as well as a former chair of MASAC. Other ATHN board directors were drawn from different regions of the country to bring insight and expertise from clinical nursing, social services, law, and the management of treatment centers. A consumer member and the new ATHN CEO complete the voting membership. And, to help ensure compatibility with the increasingly sophisticated public health network dedicated to hereditary blood disorders, a well respected hematologist represents the CDC in a non-voting capacity. To date, ATHN has had its first fully represented board of directors meeting. This meeting began ATHN’s effort to develop a concrete work plan to address its short and long term goals.  ATHN committees have been formed to address its technology infrastructure, privacy issues, data confidentiality, security and access issues, community relations and communications, as well as ATHN’s more basic organizational needs. Collaboration is valued; individuals and organizations with interest and experience in these areas are always welcome to help make ATHN the best network it can be.

Data Access: Who Gets It? Who Doesn’t?

As a new organization, ATHN’s policies related to privacy, data security and access are in the formative stage. However, the basic principles of data access have been outlined.

1. Maintaining confidentiality is one of ATHN’s core values. Only de-identified data or data that meets HIPAA standards and IRB requirements will be available for national aggregation.

2. Several different approaches to create an individual unique patient identifier at a local level to assure portability of patient data are being explored.

3. An open and transparent process for requesting access to data will be established. Lessons learned from existing disease registries and databases within government (e.g., UDC) and the private sector, including N-DOC and the HTRS database approaches, will be evaluated for best practices. ATHN will have oversight with broad representation including consumers to assure that this process protects patient confidentiality and that data is available for meaningful purposes. No agency including any governmental agency or for profit organization will have preferential access to data.

4. ATHN intends that its approach will facilitate the reuse of common data elements and reduce the need to collect the same data repeatedly for different purposes using different formats. The creation of a robust, uniform, national web-based platform with highly secure and controlled access will make this possible. More importantly, to avoid duplicate efforts and conserve the precious resources available to the community, community-wide collaboration will be needed. Toward that goal, ATHN is committed to working collaboratively with the CDC, MCHB, NHF, MASAC, HTRS and others who share our vision.

5. Finally, at the local level, the patients and providers will benefit from having access to more structured data wherever and whenever needed to support the continuum of care. With a secure central server backing up a patient’s medical information, precious data will no longer be lost due to disasters like Katrina.

How You Can Help

At this stage, one of the most fundamental ways to put the resources of the community to work is by supporting ATHN in its mission. We hope that the community’s understanding of ATHN’s mission will lead to their view of ATHN as an avenue to improve clinical outcomes in the care of patients with bleeding and thrombotic disorders. ATHN has been conceived and designed to support our community - there is no hidden agenda. Send your suggestions and ideas to communityrelations@ATHN.org. In addition, for anyone interested in contributing time and talent more actively, send your resume along with a statement of your interest to volunteer@ATHN.org.