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ATHNready – A Disaster Preparedness Program

Disasters, such as hurricanes Katrina and Rita, can disrupt the patients’ access to care, destroy local systems and underline gaps in disaster preparedness. ATHNready provides resources to help you and your patients to get ready. Drawing on best practices of centers across the country, ATHN has developed a “ready-to-go” article to raise awareness through your HTC or chapter newsletter, a Care Continuity Plan template to help your HTC build its own plan, a wallet-sized flash drive card with core medical information for your patients and a web-based interactive HTC-finder complete with driving instructions.

The lessons learned by the Federal government regarding disaster preparedness in the wake of Hurricane Katrina included fostering widespread use of interoperable electronic health records and developing a capacity for individuals to voluntarily submit their personal identifying information for virtual storage that they and their families could access during emergencies.

To help with this critical piece of planning, a new program is being rolled out through which HTCs systematically provide NHF recommended information to patients in a portable form. This program - called ATHNready - focuses specifically on the hemophilia community and is being led by ATHN.

With advice from NHF and members of the ATHN Community Liaison Group, including Ray Stanhope, Chair of the Board of Directors, NHF; and the Hemophilia Federation of America (HFA) President, Chad Stevens; members of the Committee of Ten Thousand (COTT), the Hemophilia and Thrombosis research Society (HTRS) and others; ATHNready will ensure that medical information is safe and available where and when we might need it most. A pilot program is underway.

Central to ATHNready is the use of a personalized wallet-sized flash drive with core medical information specific to each patient. Provided by the HTC, these wallet-sized flash drives will contain the core meaningful data stored in WebTracker. The elements of this data are consistent with NHF recommendations and include

  • primary blood disorder (severity),
  • co-morbidities (HIV, hepatitis, joint),
  • treatment regimens (product, dose, reason),
  • inhibitor status,
  • infusion/bleed status,
  • allergies,
  • other known diagnoses and treatments,
  • insurance,
  • demographic/emergency contacts, (not accessible to ATHN), and
  • warnings (use of aspirin or NSAIDS, IM injections, arterial punctures).

ATHNready requires patients to bring their flash drive to each visit to ensure it’s kept up-to-date.

As part of the program, ATHN, in conjunction with the CDC, has mapped the location of all HTCs around the country in an interactive format available on the ATHN website (http://www.athn.org/htc_map). Patients displaced by a disaster or moving to another location can quickly and easily identify a comprehensive HTC anywhere in the U.S. Check it out. And, please keep us updated with your HTC’s demographic details.

ATHN has also developed an article for patients and families titled “Be Prepared – Make Sure You're Ready!” This article, written by the mother of a son with severe factor VIII hemophilia, helps patients prepare for an emergency or disaster, and is available on the ATHN website (www.athn.org). ATHN hopes you will share this article with your community through your newsletter or distribution lists. The article is available as a PDF with referenced graphics already inserted. To read or share this article with your community download it here.

The ATHNready program is supported in part by Cooperative Agreement Number U27DD000319 from the Centers for Disease Control and Prevention (CDC).

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