Adopting a Standards Based Information Infrastructure for Rare Disorders Communities

Background:

Rare disorder communities face unique interoperability challenges to adopting nationwide data infrastructure systems that can support emergency preparedness, clinical outcomes analysis, research, advocacy and public health reporting requirements.

Objective:

To promote interoperability across a regional network of 130+ CDC and HRSA supported Hemostasis and Thrombosis Centers (HTC) and secure adoption of a standards based system.

Methods:

In 2006, The American Thrombosis and Hemostasis Network (ATHN), was created to provide stewardship of a secure national data base for rare bleeding and clotting disorders.

Results:

ATHN has conducted presentations reaching hundreds of individuals at regional and national hemostasis and thrombosis clinician and patient conferences to promote the concept of standards based information system. ATHN received a large multi year grant infrastructure development grant, launched a website and a national publication to educate constituents about medical informatics, and a Community Liaison Group comprised of key public/private agencies. ATHN initiated a program to formalize relationships with the HTCs: over 25% of HTCs have become ATHN Affiliates. To determine HTC electronic data infrastructure capacity, ATHN conducted a needs assessment survey which determined that 21% of HTCs do not use electronic system to collect clinical data. To foster interoperability, a technology committee guides clinician teams who have begun to validate clinical content as represented within SNOMED CT. ATHN was awarded a CDC sponsored emergency preparedness planning grant.

Conclusion:

ATHN serves as a model public health/medicine collaborative that holds great promise for achieving the adoption of standards based information technology for nationwide rare disorders communities.