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Health Information Technology

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Health Information Technology (HIT) is the multiple platforms on which individuals' medical and other health records are stored. Currently, patients and their healthcare providers experience difficulties accessing these records freely. Difficulties in accessing electronic health information (EHI) limit healthcare delivery efficiency and research efforts surrounding specific diseases.

Genetic Alliance supports:

  • Making a patient’s electronic health information (EHI) more accessible to the patient
  • Clear conditions/requirements for health information technology developers related to protecting data rights, privacy, and security
  • Health IT developers defining, developing, and making available Application Programming Interfaces (APIs) for access and exchange of EHI by consumers without special effort

What has Genetic Alliance done to push for improved Health Information Technology?

The “21st Century Cures Act”, signed into law in 2016, aimed to incorporate patient perspectives into the medical product development process while accelerating their release to those who need it the most.

  • Genetic Alliance wrote a letter suggesting possible improvements to the 21st Century Cures Act.

Genetic Alliance's Previous Statements on Health Information Technology

Comments to 21st Century Cures Act: Interoperability, Information Blocking, and the ONC Health IT Certification Program, June 3, 2019

Genetic Alliance response to the Notice of Proposed Rulemaking (NPRM) to implement the Health Information Technology for Economic and Clinical Health (HITECH) Act, September 13, 2010

Comments to HHS HITECH Privacy and Security Modifications, July 14, 2010

Remarks to Capitol Hill Staff at the Health IT Now! Coalition Briefing, March 14, 2008

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