Testimony: Put Disclosure in Patient Hands
The CEO of a start-up company developing technology to enable consumers to choose whether or not to share their health information walked members of a federal advisory committee through how the application works during a hearing June 29 in Washington.
The CEO of a start-up company developing technology to enable consumers to choose whether or not to share their health information walked members of a federal advisory committee through how the application works during a hearing June 29 in Washington.
The HIT Policy Committee's Privacy and Security Tiger Team heard from consumers and vendors during the hearing. Robert Shelton, CEO at Private Access Inc. in Irvine, Calif., explained an emerging product to let a patient choose which family members, physicians, researchers and others could see personal health information. A patient, for instance, could restrict disclosures only to those required by law, give a specialist all PHI except for psychiatric records, give broad access to family and all physicians in a specific group practice, or even enable researchers to contact the patient through Private Access.
"It has been said by some that a robust system of highly granular patient consents and detailed accounting for disclosures is impossible or will be unacceptably costly, and yet on the basis of our development efforts to date, I would beg to differ," Shelton said in written testimony. "On the other hand, it has been said that a consent management system is easy to provide. To this assessment, as well, I would with all due respect, wish to object."
Private Access, he noted, has worked on its consent management system for more than three years. "To date, we have written more than 600,000 lines of code, addressed a number of important issues from the ease of the graphical user interface, to the adequacy of legal disclosures in obtaining informed consent, the latency of response time by the rules engine, and the ontology on which privacy directives should be based," he testified. "All of these achievements have represented major challenges, and yet we have made substantial progress and attained extremely positive consumer feedback and acceptance."
The company has invested $8 million in developing its first generation product, and this year launched a series of commercial beta releases using live patient data. To access Shelton's testimony, click here.
--Joseph Goedert
The HIT Policy Committee's Privacy and Security Tiger Team heard from consumers and vendors during the hearing. Robert Shelton, CEO at Private Access Inc. in Irvine, Calif., explained an emerging product to let a patient choose which family members, physicians, researchers and others could see personal health information. A patient, for instance, could restrict disclosures only to those required by law, give a specialist all PHI except for psychiatric records, give broad access to family and all physicians in a specific group practice, or even enable researchers to contact the patient through Private Access.
"It has been said by some that a robust system of highly granular patient consents and detailed accounting for disclosures is impossible or will be unacceptably costly, and yet on the basis of our development efforts to date, I would beg to differ," Shelton said in written testimony. "On the other hand, it has been said that a consent management system is easy to provide. To this assessment, as well, I would with all due respect, wish to object."
Private Access, he noted, has worked on its consent management system for more than three years. "To date, we have written more than 600,000 lines of code, addressed a number of important issues from the ease of the graphical user interface, to the adequacy of legal disclosures in obtaining informed consent, the latency of response time by the rules engine, and the ontology on which privacy directives should be based," he testified. "All of these achievements have represented major challenges, and yet we have made substantial progress and attained extremely positive consumer feedback and acceptance."
The company has invested $8 million in developing its first generation product, and this year launched a series of commercial beta releases using live patient data. To access Shelton's testimony, click here.
--Joseph Goedert
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