Policy on Health Information Technologies Issues
Genetic Alliance actively engages all stakeholders--industry professionals, researchers, healthcare providers, public policy leaders, and individuals, families, and communities--to promote novel partnerships and disruptive innovation as crucial tools in transforming health systems. Through this rich intersection of knowledge and expertise, we craft information technology solutions as vital tools to improve the health of individuals.
We recognize the promise of standardized health information technology to lower healthcare costs, improve quality and coordination of care, and reduce medical errors. We acknowledge that stakeholders have concerns surrounding incomplete privacy protections, increased bureaucracy, and consumer access to personal medical information, among other issues. Genetic Alliance puts forward the following four principles to ensure that the development and implementation of health information technology remains focused on building a flexible system that empowers individuals and maximizes the effectiveness and quality of research and healthcare:
- Engage all stakeholders in systems level development of technology, standards, policy, and approaches to balance privacy and access;
- Capitalize on the expanded capacity provided by health IT to find new and innovative ways to promote interoperability and integrate health systems;
- Enable access to information for consumers and providers to promote informed decision-making; and
- Promote systemic openness to facilitate data liquidity while providing dynamic privacy preferences to consumers.
Current activities in health information technology:
- On July 13, 2010 the Department of Health and Human Services announced new regulations regarding meaningful use for electronic heath records. Click here to learn more.
- On May 11 Sharon Terry, President and Chief Executive Officer of Genetic Alliance, was appointed as a member of the Health Information Technology (HIT) Standards Committee. This federal advisory body is charged with making recommendations to the Department of Health and Human Services National Coordinator for Health Information Technology on standards, implementation specifications, and certification criteria for the electronic exchange of information. Currently she is serving as a member of the Privacy & Security Sub-Committee working with providers, vendors, and thought-leaders in the HIT space to craft technical standards for the privacy policies developed by the HIT Policy Committee. Learn more.
- On May 21, Genetic Alliance submitted comments in response to the HHS Guidance for securing health information and preventing harm from breaches. In our response, we provided principle-level comments on the definition of encryption to incentivize adoption and the destruction of paper protected health information (PHI). The main purpose of our comments, however, was to discuss the value limited data sets contribute to research, including that of our federal health initiatives, and as a model for securing PHI. Read our comments
- Genetic Alliance is a founding member of the Health IT Now! Coalition. Earlier in the year, Genetic Alliance authored one of three early posts to the Coalition's blog, entitled "Transforming the Privacy Dialogue." Read the post here.
- Sharon Terry, Genetic Alliance President & CEO, provided public witness testimony at a hearing of the House Committee on Appropriations, Subcommittee on Labor, Health and Human Services, Education, and Related Agencies, where she discussed the necessity for substantial funding for health IT.
- Genetic Alliance pledged support for the American National Standards Institute initiative to ensure that electronic health records will support clinical research activities.
- Genetic Alliance, a 501(c)(3) organization, and Private Access, Inc. formed a novel public-private partnership designed to simultaneously protect patients' privacy rights while creating a faster and more cost effective way for researchers to connect with patients. Learn more.
We will continue to update this page to reflect our process and activities.
