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The announcement was made today in conjunction with the prestigiousHarvard Privacy Symposium and 16th Annual National HIPAA Summit. PrivateAccess' founder and CEO, Robert Shelton, speaking on a panel entitled "Privacyand Technology: Giving Patients Control Over Uses of Their HealthInformation," previewed both the company's planned technology and thestrategic partnership struck with Genetic Alliance. In his comments, Sheltonobserved that, "this is a game-changing moment where the proponents of anextremely well-conceived technology focusing on privacy and controlling accessrights to highly confidential health records and a patient population that hasan uncommonly high need for these tools come together to solve a problem thathas historically been a major impediment to health data exchange."
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Shelton, who also serves as chairman of a national non-profit diseaseadvocacy organization that is a Genetic Alliance network participant,explained that the partnership between Private Access and Genetic Alliancewill address the current problem that maintaining patient privacy andproviding access to medical records are inherently at odds. "Getting a properresolution to this complex issue accelerates the translation of research intodiagnostics and treatments," said Sharon F. Terry, President and CEO ofGenetic Alliance.
"Our vision for harmonizing privacy and access through a suite ofweb-based software applications is ideally suited to the needs of those whosuffer from chronic illness and genetic diseases," said Shelton. Explainingthe unusual step of forming a partnership between a for-profit company and anot-for-profit, Terry added, "Genetic Alliance's mission is to transformhealth through genetics and to do so in part through novel partnerships inadvocacy. Robert has run one of the disease support organizations in ournetwork and understands the needs and issues of these organizations. PrivateAccess has the right technology, at the right time to serve individuals,families, providers, researchers and all healthcare stakeholders dealing withgenetic conditions and chronic disease. By working together, I'm convinced wecan create an essential environment of trust that empowers people to be thesolution."
"Our approach is to empower individuals to protect the privacy of theirpersonal health information while simultaneously authorizing stakeholders toaccess to that information to find treatments to diseases quicker," said MarcD. Kirshbaum, president of Private Access. Kirshbaum further commented,"Genetic Alliance has been very successful convening diverse stakeholders -including disease-specific advocacy organizations, universities, companies,government agencies, and policy organizations - to explore and create novelpartnerships to overcome the historical barriers required to reduce medicalresearch costs and speed the process of finding treatments. Earlier thisyear, we saw this in Genetic Alliance's role in advocating for the GeneticInformation Non-Discrimination Act (GINA) which was passed by the US Congressand signed into law by the President."
Adds Kirshbaum, "Private Access is honored to be working with GeneticAlliance in this transformative initiative. Our
