ONC is making history tomorrow with the first-ever federal government sponsored hearing on privacy-enhancing technologies.
The hearing will showcase innovative, existing privacy-enhancing Health IT products and systems, and future technologies that put patients back in control of their electronic health information. The technologies will be discussed by 5 experts and the Privacy and Security Tiger Team.
Early this year, Dr. Blumenthal met with the bipartisan Coalition for Patient Privacy. He told us our idea for this conference struck him as "very intriguing. Two principles should animate our policy development. Patients/consumers come first, and the process should be fair and open." So he agreed to hold a hearing.
This is the first hearing ONC has held to focus on Americans’ existing privacy rights and expectations to control sensitive health records, from prescriptions to DNA, in electronic systems and data exchanges. It is very timely because billions in stimulus dollars are about to flow. The public has never had the chance to see if health technologies empower them to control access to their health information -- or not.
What kinds of systems do you want to get the stimulus billions? Current HIT systems that facilitate the data mining, theft, and sale of personal health information or systems that put you in control of your information?
Inside-the-beltway domination of policy and standards by major legacy health IT vendors, many major hospitals, the health data mining industries, and physicians’ organizations has made it very hard for consumer and privacy advocates to be heard, even though we represent the majority of the American public. The fear is if those who want to use our sensitive health information have to ask first to see or use it, we might refuse. And we might. But it’s our right to do so.
Today’s HIT systems put our jobs and our kids' futures at risk by exposing everything from our prescription records to our DNA to sale and theft. Once our health data is exposed, we can never make that data private again.
Showcasing technology that empowers patients to actively share data for treatment, personal benefit, and for research, while empowering patients to protect personal information from misuse and theft is critical -- especially now as HHS prepares to spend billions on EHRs and models for data exchange that do not require meaningful and comprehensive privacy controls.
The resulting video of the hearing will be a critical online resource for the public, the media, states, and the world. Everyone can see the existing robust privacy-enhancing technologies that meet patients' expectations and rights today to control use of PHI while enabling compliance with strong state and federal laws, medical ethics, and our Constitutional rights to privacy.
Latanya Sweeney’s testimony and slides show the need to choose the right HIT technologies and health information exchange systems up front, rather than letting "100 weeds fester." See her testimony (PDF) at: http://patientprivacyrights.org/wp-content/uploads/2010/04/Sweeney-CongressTestimony-4-22-10.pdf
See her slides at: http://patientprivacyrights.org/wp-content/uploads/2010/06/Sweeney-TrustworthyNHINDesigns.pdf
If you cannot attend in person, please listen in and comment at the end during the comment period or submit comments online. The video link of the hearing will be posted soon after the hearing.
Take part during the public comment periods morning and afternoon: Tell ONC and the Tiger Team to build privacy-enhancing health IT systems you can trust. Tell ONC to build privacy-enhancing EHRs and systems for data exchange -- not blow the stimulus billions on systems that will never be trusted.
If we don’t fight for our rights to control sensitive personal health information, we will never gain control over the rest of our personal information in the Digital Age.
Register to attend the hearing at: http://www.blsmeetings.net/consumerchoicetechnologyhearing/
For the agenda, see: http://healthit.hhs.gov/portal/server.pt?open=512&mode=2&objID=2833&PageID=19423
Thanks for helping to save privacy!
