ATHNreport Spring 2009 - Affiliates

ATHN Affiliates Top One Hundred

ATHN Affiliates now include 104 of 127 HTCs. For a complete listing, go to www.athn.org/affiliates.
Welcome new Affiliates and thank you to all!

ATHN Affiliate HTC Data Use and Business Associate Agreement; Patient Authorization Forms

ATHN Affiliates have agreed to collect and store data in a national database through ATHN. Now that WebTracker is ready to go live, the vision of an ATHNdataset as a community resource that supports outcomes analysis, research, advocacy and public health reporting is becoming closer to reality. To comply with the requirements of the Health Insurance Portability and Accountability Act of 1996 (HIPAA), the next step for Affiliates is the execution of a data use and business associate agreement. Once that is complete, ATHN Affiliates can begin to recruit patients for the ATHNdataset.  <Click here for a process flow diagram>

The HTC Data Use and Business Associate Agreement meets all HIPAA Privacy Rule requirements as they relate to data sharing for research, public health, or health care operations in the form of a Limited Data Set. There are important safeguards to protect against unauthorized disclosure and use and assurances that ATHN will not attempt to identify or contact individuals who are part of the ATHNdataset. Because ATHN is not only the intended recipient of the Limited Data Set, but is also a business associate for the purposes of providing support, maintenance and ongoing web-based development of the WebTracker software, the Data Use and Business Associate provisions have been combined into a single agreement. Additionally, although not required by HIPAA, ATHN has elected to require Affiliates to seek signed patient authorizations before patient data will become part of the ATHNdataset. As a community-based organization that is committed to openness and transparency, ATHN believes this will facilitate support and confidence of patients and educate patients about the importance of their participation.

As of June 1st, pilot sites have agreed to present the ATHN Affiliate HTC Data Use and Business Associate Agreement as well as the Patient Authorization forms and the ATHN process for execution to appropriate individuals and departments in their institutions for review, including legal departments, IRBs, and any other administrative offices devoted to privacy concerns. Pilot Sites include:

• Emory University, Pam Bryant, Web Tracker Beta Test Site
• University of California, James Huang
• Michigan Children’s Hospital, Jeanne Lusher
• University of Colorado, Brenda Riske, Web Tracker Beta Test Site
• Comprehensive Bleeding Disorders Center of Peoria, Angie Riedel, Web Tracker Beta Testing Site
• University of Michigan, Becky Hauke, Web Tracker Beta Testing Site
  

ATHN processes and documents were developed by our Privacy, Security and Data Access Committee chaired by Tami Wood-Lively under the guidance of HIPAA experts, and have undergone extensive legal and community review. There is great variability among institutional policies and this pilot program and site review process will provide valuable feedback to assist in the identification and resolution of policy issues and help ATHN to prepare to address questions and concerns that may arise in the national distribution of these documents to ATHN Affiliates. Feedback from pilot sites is expected in mid-July and the documents will be available to ATHN Affiliates later this summer. During any part of this process, if there are questions, please feel free to contact ATHN at info@athn.org

ATHN Gears Up To Launch New Readiness Tools

Through the ATHNready disaster preparedness initiative, ATHN has developed the ATHNready Care Continuity Plan template and guidebook with tools, training and communications materials for providers and patients to support care in the event of an emergency.

The ATHNready Care Continuity Plan and ATHNready tools will be released at this year’s ATHN Data Summit, July 30th and 31st in Chicago.

The Plan establishes disaster protocols for HTCs that include restoration of the web-based infrastructure in the event of a disaster and leverages this web-based infrastructure to ensure that patients and providers have access to accurate medical and treatment history that could reduce morbidity, mortality and costs of care associated with a disaster situation. Customizable electronic templates address the needs of independent and freestanding treatment centers, as well as centers that are part of larger healthcare systems.

Developed and tested over the past two years, the ATHNready tools, training and communications materials include 

• A wallet-sized flash drive containing the Personal Health Report that HTCs can give to their patients. The Personal Health Report contains up-to-date, core health information that can support medical treatment decisions in the event of an emergency. This is a standard report in the new WebTracker and will enable HTCs to easily provide up-to-date information to patients.
• An interactive HTC Finder, developed using Google maps, to assist patients and families in identifying and accessing alternate HTCs in case of an emergency.
  

Patient and family receptivity to the ATHNready Personal Health Report and the interactive ATHN HTC Finder was researched through focus groups this spring as part of the CDC Cooperative Agreement #5U27DD000319. A summary of these findings will be presented at the ATHN Data Summit 2009. Register today. www.athn.org/summit