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Community Liaison Group Meeting

The second annual meeting of The Community Liaison Group took place on October 29, 2008, in Atlanta. We were pleased to be able to bring members of the group up to date on the state of ATHN, tour the mid-tier data center at Centers for Disease Control and Prevention (CDC) where ATHN proposes to store the national database and the ATHNdataset, and to get feedback from the group on ATHN’s strategy for patient authorization and disaster preparedness.

The tour of the data center showcased the physical structures that will support ATHN’s policy and operational efforts to protect the security and privacy of patient data coming from HTCs as centers convert from Lab Tracker™ to WebTracker and begin to submit data to the ATHNdataset. for use in research, outcomes measurement, public health and advocacy.

The CDC’s mid-tier data center is housed in a fortified location in which data can be mirrored to a disaster recovery site on a separate power grid. The CDC’s facility offers the same level of protection as national biosurveillance systems, a compelling feature for ATHN given our commitment to safeguarding the security and privacy of patient data.

In addition to the tour, ATHN reviewed the proposed data flow between patients, HTCs and the ATHNdataset, highlighting the structural security protections built into the flow. These encompass access limitations at the level of the individual HTC and a system of data encryption. Access limitation includes a system of HTC staff user identification, secure login procedures and unique passwords, along with digital certificates issued to HTCs by the CDC. The system of data encryption is designed according to national standards, making the data “unreadable” to all except HTC providers, and the encryption “key” will be held by a third party software developer.

Community Liaison Group members provided input on ATHN’s proposed Patient Authorization process and form, allowing ATHN to show how our proposed process and form significantly exceed the Federal legal requirements related to sharing and using protected health information. ATHN’s Patient Authorization has been drafted to ensure that patients are informed and voluntarily choose to join us and support our efforts to facilitate research that will advance scientific knowledge to improve care and outcomes for persons affected by bleeding and clotting disorders.

The Group made specific suggestions for improvements to the Patient Authorization and process flow. It also offered suggestions regarding security and privacy of patient data within the ATHNready disaster preparedness program, principally that ATHN

  • remind HTCs of the importance of shutting down access to the patient database quickly after a staff person leaves employment by an HTC;


  • clearly define a process by which a patient record can be transferred from one HTC to another, in the event of a disaster or other situation whereby the patient’s primary HTC will not be providing care; and


  • explore options for increasing security of the wallet flash drives as well as the potential for a direct electronic interface from Lab Tracker (e.g. Medic Alert).

We want to take this opportunity to publicly thank NHF, HFA, COTT, HTRS and CDC for their thoughtful and engaged discussion at the October meeting and suggestions for improving key aspects of critical ATHN initiatives related to operationalizing the national database and creating the ATHNdataset. Their input and collaboration remains fundamental to the realization of ATHN’s mission and vision.

Industry Liaison Group Meeting

To carry out its mission and vision, ATHN relies on the strength of its collaborative partnerships both within the hemophilia and thrombosis patient community and within a range of related industries that serve this community. As part of its strategic plan, ATHN identified data analysis and research that facilitates knowledge creation and advocacy as a key strategic opportunity. Toward that end, ATHN has expanded its collaborative relationships with pharmaceutical, biotech and medical product companies in the field by creating an Industry Liaison Group.

Through the Industry Liaison Group, ATHN seeks to:

  • enable increased direct communication between the ATHN Board of Directors and industry stakeholders on topics including, but not limited to, project direction, status, progress, issues and challenges;


  • obtain formal input on industry needs regarding data types, analysis, clinical studies and marketing surveillance;


  • facilitate alignment with broader surveillance requirements of the FDA and CDC; and


  • formally identify representatives responsible for being a conduit for communication with parent organizations.

The inaugural meeting of this group, held during the National Hemophilia Foundation (NHF) annual meeting in Denver in November, was an unqualified success! Industry Liaison Group members shared openly about important issues, such as data quality, data queries and reports, data completeness and analysis and research.

ATHN looks forward to working with the Industry Liaison Group and is grateful to its members for their active support of our mission and vision. Thank you to Baxter BioScience, Bayer Healthcare, CLS Behring, Federal Drug Administration, Grifols Biologicals and Novo Nordisk.

Call for ATHN Committee Volunteers for 2009

Looking for a way to give back to the hemophilia and thrombosis community? Consider becoming and ATHN volunteer! ATHN is currently recruiting volunteers to participate on committees in 2009. Becoming an ATHN volunteer is a great way to contribute more actively in support of ATHN’s mission, expand your network of colleagues and perhaps even develop new professional skills. Volunteer applications are available on ATHN’s website: http://www.athn.org/committees.

Committees open to volunteers are:

  • Technology Committee – Ann Forsberg, chair

    Charge: To propose and oversee implementation of the technology development plan that will create a secure, stable and flexible infrastructure with standardized content as the solid foundation for ATHN’s future. The WebTracker™ development and testing is the responsibility of its subcommittee.


  • Privacy, Security and Data Access Committee – Tami Wood-Lively, chair

    Charge: To provide guidance to the Board and oversight of ATHN’s operations to ensure privacy of patient data, security at the ATHNdataset, as well as open and transparent processes for access consistent with ATHN’s core values.


  • Community Relations and Communications Committee – Wanda Foster, chair

    Charge: To ensure that an accurate and compelling communication strategy cultivates collaborative relationships between ATHN and the bleeding and thrombosis community, including but not limited to HTCs, community based organizations, patients, providers and funding sources.


  • Project Review Panel – Jeanne Lusher, chair

    Charge: To implement an open and transparent screening process for reviewing project ideas generated by ATHN committees, ATHN Affiliates, or other entities. The panel reviews project proposals submitted to ATHN based on scientific soundness, fit with ATHN mission, values and research agenda, feasibility given ATHN’s current infrastructure, contribution to ATHN’s growth as well as financial impact on the organization in accord with ATHN policy.

Most committees meet by conference call at least once per quarter and in person at the ATHN Data Summit. Committee members are expected to review agenda materials in advance of meetings and to respond to email queries in a timely manner. All committee members complete a written disclosure of conflicts.

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