This WIRED article, Medical Records: Stored in the Cloud, Sold on the Open Market, is based on yesterday’s NYTimes story that closed by quoting Patient Privacy Rights.
It points out the 2 KEY ways that electronic health systems violate patient privacy:
• Health technology vendors sell patient records without consent
• It is impossible to de-identify health information, so promises that the data can’t be re-identified must to be verified by outside audits
The chart at the top of the story is from our website—it shows the millions: businesses and government agencies---that today can do whatever they want with our health records, including selling them for profit.
The ‘fix’ is that Congress must restore patients’ rights to control personal health information------this right has been the foundation of the healthcare system for 2,400 years.
No one else should own our health records and no one should have access to them without our consent.
Showing posts with label EHR. Show all posts
Showing posts with label EHR. Show all posts
Monday, October 19, 2009
Saturday, October 17, 2009
Re-Identification. From Netflix to Health Records.
Today’s NY Times story points out the FACT that is very easy to re-identify supposedly “de-identified” information. Singer starts with how the Netflix “de-identified” data base was proven to be re-identifiable and moves on to describe Latanya Sweeney’s famous re-identification of the medical records of Gov Weld.
See the NY Times Article: When 2+2 Equals a Privacy Question
See the NY Times Article: When 2+2 Equals a Privacy Question
Friday, October 9, 2009
Open Source Research
See the Government Health IT article: NCI to open research grid to cancer patient 'army'
Women desperate to cure breast cancer are contributing their sensitive personal health information to "an army" of researchers.
But there is no reason that these altruistic women have to risk their futures and their daughters' futures to find a cure.
It's possible to do research without risking their futures and their daughters' and granddaughters' futures by using privacy-protective technologies and robust informed electronic consent. But this project does NOT protect the privacy of these generous and well-intentioned women.
The women's data can be downloaded by "thousands of users"--all of whom make copies of their extremely sensitive, IDENTIFIABLE records. The records are identifiable so that the women can be contacted by researchers.
Some of the major things wrong with this picture:
1) The NCI system allows “researchers (to) form and maintain large breast cancer disease databases.” Is there any way to tell if the security is ironclad, state-of-the-art? No.
2) How many copies will researchers make? How many times will the data be replicated and backed-up across the world? No way to know.
3) What countries will copies of the records be kept in? No way to know.
4) How many and which researchers will download and keep their data? No way to know.
5) The researchers must sign agreements to protect and not sell the data, but there are no 'data police' to enforce those agreements. If there are no 'data police' watching this data, how do the women know it's safe? No way to know.
6) What if a woman does not approve of a particular study or researcher who has their data? Can a woman prevent any researcher from using her information? No.
7) How will the data be handled after the research study is complete? How will the women know if it is destroyed? No way to know.
8) How safe is research access via a web browser? No way to know
The severe flaws in this plan are obvious. Fearful women desperate for cures are being exploited by the government and the research industry that designed these systems to serve their needs, NOT the women's rights to privacy. Putting such sensitive data out into cyberspace KNOWING it can never be retrieved or destroyed is grossly irresponsible. Like Paris Hilton's sex video, this data will live forever in cyberspace, risking future jobs and opportunities of every child of every woman desperate for a cure.
The NCI could do this a better way---we can have research and privacy at the same time. But the privacy protective technologies that can enable both are not being used. Why not?????
See our testimony Sept 18th at the national HIT Policy Committee and the many letters from the Coalition for Patient Privacy to federal agencies and Congress describing how to do research while protecting privacy.
And NO--the Genetic Information Nondiscrimination Act (GINA) DOES NOT protect our genetic data. It allows insurers and employers to have our genetic data and it has no enforcement. Zero. And HIPAA has no protections for genetic data either--it allows others to control and use our data without consent.
The cost of contributing to research should not be that your female descendents are unemployable. Unless data is protected, we will have generations of people who cannot work because employers will not risk hiring anyone at risk of getting a disease.
Women desperate to cure breast cancer are contributing their sensitive personal health information to "an army" of researchers.
But there is no reason that these altruistic women have to risk their futures and their daughters' futures to find a cure.
It's possible to do research without risking their futures and their daughters' and granddaughters' futures by using privacy-protective technologies and robust informed electronic consent. But this project does NOT protect the privacy of these generous and well-intentioned women.
The women's data can be downloaded by "thousands of users"--all of whom make copies of their extremely sensitive, IDENTIFIABLE records. The records are identifiable so that the women can be contacted by researchers.
Some of the major things wrong with this picture:
1) The NCI system allows “researchers (to) form and maintain large breast cancer disease databases.” Is there any way to tell if the security is ironclad, state-of-the-art? No.
2) How many copies will researchers make? How many times will the data be replicated and backed-up across the world? No way to know.
3) What countries will copies of the records be kept in? No way to know.
4) How many and which researchers will download and keep their data? No way to know.
5) The researchers must sign agreements to protect and not sell the data, but there are no 'data police' to enforce those agreements. If there are no 'data police' watching this data, how do the women know it's safe? No way to know.
6) What if a woman does not approve of a particular study or researcher who has their data? Can a woman prevent any researcher from using her information? No.
7) How will the data be handled after the research study is complete? How will the women know if it is destroyed? No way to know.
8) How safe is research access via a web browser? No way to know
The severe flaws in this plan are obvious. Fearful women desperate for cures are being exploited by the government and the research industry that designed these systems to serve their needs, NOT the women's rights to privacy. Putting such sensitive data out into cyberspace KNOWING it can never be retrieved or destroyed is grossly irresponsible. Like Paris Hilton's sex video, this data will live forever in cyberspace, risking future jobs and opportunities of every child of every woman desperate for a cure.
The NCI could do this a better way---we can have research and privacy at the same time. But the privacy protective technologies that can enable both are not being used. Why not?????
See our testimony Sept 18th at the national HIT Policy Committee and the many letters from the Coalition for Patient Privacy to federal agencies and Congress describing how to do research while protecting privacy.
And NO--the Genetic Information Nondiscrimination Act (GINA) DOES NOT protect our genetic data. It allows insurers and employers to have our genetic data and it has no enforcement. Zero. And HIPAA has no protections for genetic data either--it allows others to control and use our data without consent.
The cost of contributing to research should not be that your female descendents are unemployable. Unless data is protected, we will have generations of people who cannot work because employers will not risk hiring anyone at risk of getting a disease.
Tuesday, August 4, 2009
Security and Hacking, Real Fears
See the WSJ Article: New Epidemic Fears: Hackers
Securing health records in small doctor's offices and clinics is not easy: small offices can't afford Fort-Knox style data protection measures, like hiring security experts to make sure hackers aren’t getting into their systems. Even if electronic health records software includes encryption and other security features doesn't mean those features will be turned on and used.
• Now, many privacy advocates are concerned the administration's effort could end up making health information less secure. "If there isn't a concerted effort to acknowledge that the security risks are very real and very serious then we could end up doing it wrong," says Avi Rubin, technical director of the Information Security Institute at Johns Hopkins University.
• "As more information is shared, it is subjected to the weak-link effect."
• Mr. Osteen's efforts to safeguard information won't be useful if smaller providers he shares it with haven't made the same kind of security investments."
Securing health records in small doctor's offices and clinics is not easy: small offices can't afford Fort-Knox style data protection measures, like hiring security experts to make sure hackers aren’t getting into their systems. Even if electronic health records software includes encryption and other security features doesn't mean those features will be turned on and used.
• Now, many privacy advocates are concerned the administration's effort could end up making health information less secure. "If there isn't a concerted effort to acknowledge that the security risks are very real and very serious then we could end up doing it wrong," says Avi Rubin, technical director of the Information Security Institute at Johns Hopkins University.
• "As more information is shared, it is subjected to the weak-link effect."
• Mr. Osteen's efforts to safeguard information won't be useful if smaller providers he shares it with haven't made the same kind of security investments."
Monday, July 6, 2009
UK Handing off their health records?
Federal Computer Week: U.K. mulls handing off national health records to Microsoft, Google
It will be interesting to see which one the UK chooses. Microsoft joined the bipartisan Coalition for Patient Privacy to urge Congress to restore consumer control over PHI in 2007. Google has not.
MS signed Coalition letters in 2007 and 2009, and agreed to support the Coalition's tough privacy principles and health privacy rights in electronic systems. HealthVault was built to adhere to the Coalition's stringent privacy principles. Open, public promises by major corporations are taken very seriously by federal regulatory agencies and consumer advocates.
The promises by the technology corporations that joined the Coalition are a rebuke to other HIT vendors and the data mining industry that will do anything to get their hands on PHI for all sorts of uses that patients would never agree to.
Today, the clearest sign of serious corporate commitment to health privacy rights is joining the Coalition for Patient Privacy and standing with consumers to build an ethical, legal HIT system---the only kind that will be trusted and succeed.
It will be interesting to see which one the UK chooses. Microsoft joined the bipartisan Coalition for Patient Privacy to urge Congress to restore consumer control over PHI in 2007. Google has not.
MS signed Coalition letters in 2007 and 2009, and agreed to support the Coalition's tough privacy principles and health privacy rights in electronic systems. HealthVault was built to adhere to the Coalition's stringent privacy principles. Open, public promises by major corporations are taken very seriously by federal regulatory agencies and consumer advocates.
The promises by the technology corporations that joined the Coalition are a rebuke to other HIT vendors and the data mining industry that will do anything to get their hands on PHI for all sorts of uses that patients would never agree to.
Today, the clearest sign of serious corporate commitment to health privacy rights is joining the Coalition for Patient Privacy and standing with consumers to build an ethical, legal HIT system---the only kind that will be trusted and succeed.
Monday, June 22, 2009
But privacy is ALREADY gone!
Refer to Wall Street Journal article: Is Government Health Care Constitutional?
The authors fear that Americans' health privacy rights will be eliminated by health reform if a proposed "public plan" evolves into "single payer".
They are too late, there is no privacy (the right to control personal information) in the US electronic health system ---EXCEPT for the strong new rights Congress added to the stimulus bill: the ban on sales of PHI, the right to segment sensitive records, and the right to limit disclosure of PHI to health plans for payment or HCO if treatment is paid for out-of-pocket.
Our strong existing ethical and legal privacy rights (a powerful national consensus arrived at over 200+ years) are being totally ignored by federal and state government and industry.
The authors clearly don't know that we have no health privacy today or that privacy advocates in the bipartisan Coalition for Patient Privacy (representing 10 million Americans) work to restore those rights.
In 2002, amendments to the HIPAA regulations granted new rights to corporations and government to use ALL health data without informed consent for purposes no one would ever agree to AND eliminated Americans' rights to give consent before our data is used. See: http://www.patientprivacyrights.org/site/PageServer?pagename=HIPAA_Intent_Vs_Reality . In 1999, the HIPAA statute granted law enforcement unfettered access to all electronic health records without informed consent or any judicial process.
Both Democratic and Republican Administrations and Congress have contributed to eliminating patients' rights to control personal health information. The ONC-Coordinated Federal Health IT Strategic Plan: 2008-2012, requires all EHRs to be "wired" for data mining and requires every citizen to have an EHR by 2014.
See: http://www.patientprivacyrights.org/site/DocServer/HITStrategicPlan08.pdf?docID=5161
The Federal Strategic Plan grants "back door" access to the nation's electronic records to government agencies; to the for-profit research industry for P4P, QI, population health, genetic research (personalized medicine), etc; and to the insurance industry to detect fraud (this is one of the most offensive and discriminatory measures planned--the last people patients want to have MORE access to sensitive health records are insurers and employers).
Key Quotes:
• The Supreme Court created the right to privacy in the 1960s
• the justices posited a constitutionally mandated zone of personal privacy that must remain free of government regulation, except in the most exceptional circumstances.
• Taking key decisions away from patient and physician, or otherwise limiting their available choices, will render any new system constitutionally vulnerable.
• if over time, as many critics fear, a "public option" health insurance plan turns into what amounts to a single-payer system, the constitutional issues regarding treatment and reimbursement decisions will be manifold. The same will be true of a quasi-private system where the government claims a large role in defining acceptable health-insurance coverage and treatments. There will be all sorts of "undue burdens" on the rights of patients to receive the care they may want. Then the litigation will begin.
• In crafting the law, however, its White House and congressional sponsors must keep privacy -- that near absolute right to personal autonomy they have so often praised and promoted -- squarely before them. The only thing that is certain today is that the courts, and not Congress, will have the last word.
The authors tilt at the wrong windmill --not realizing they are too late: the privacy for health data in electronic systems is already GONE. We hope they will join us and work to RESTORE Americans' longstanding ethical and legal rights to health privacy--regardless of a "public plan" or whether it turns into "single payer".
The authors fear that Americans' health privacy rights will be eliminated by health reform if a proposed "public plan" evolves into "single payer".
They are too late, there is no privacy (the right to control personal information) in the US electronic health system ---EXCEPT for the strong new rights Congress added to the stimulus bill: the ban on sales of PHI, the right to segment sensitive records, and the right to limit disclosure of PHI to health plans for payment or HCO if treatment is paid for out-of-pocket.
Our strong existing ethical and legal privacy rights (a powerful national consensus arrived at over 200+ years) are being totally ignored by federal and state government and industry.
The authors clearly don't know that we have no health privacy today or that privacy advocates in the bipartisan Coalition for Patient Privacy (representing 10 million Americans) work to restore those rights.
In 2002, amendments to the HIPAA regulations granted new rights to corporations and government to use ALL health data without informed consent for purposes no one would ever agree to AND eliminated Americans' rights to give consent before our data is used. See: http://www.patientprivacyrights.org/site/PageServer?pagename=HIPAA_Intent_Vs_Reality . In 1999, the HIPAA statute granted law enforcement unfettered access to all electronic health records without informed consent or any judicial process.
Both Democratic and Republican Administrations and Congress have contributed to eliminating patients' rights to control personal health information. The ONC-Coordinated Federal Health IT Strategic Plan: 2008-2012, requires all EHRs to be "wired" for data mining and requires every citizen to have an EHR by 2014.
See: http://www.patientprivacyrights.org/site/DocServer/HITStrategicPlan08.pdf?docID=5161
The Federal Strategic Plan grants "back door" access to the nation's electronic records to government agencies; to the for-profit research industry for P4P, QI, population health, genetic research (personalized medicine), etc; and to the insurance industry to detect fraud (this is one of the most offensive and discriminatory measures planned--the last people patients want to have MORE access to sensitive health records are insurers and employers).
Key Quotes:
• The Supreme Court created the right to privacy in the 1960s
• the justices posited a constitutionally mandated zone of personal privacy that must remain free of government regulation, except in the most exceptional circumstances.
• Taking key decisions away from patient and physician, or otherwise limiting their available choices, will render any new system constitutionally vulnerable.
• if over time, as many critics fear, a "public option" health insurance plan turns into what amounts to a single-payer system, the constitutional issues regarding treatment and reimbursement decisions will be manifold. The same will be true of a quasi-private system where the government claims a large role in defining acceptable health-insurance coverage and treatments. There will be all sorts of "undue burdens" on the rights of patients to receive the care they may want. Then the litigation will begin.
• In crafting the law, however, its White House and congressional sponsors must keep privacy -- that near absolute right to personal autonomy they have so often praised and promoted -- squarely before them. The only thing that is certain today is that the courts, and not Congress, will have the last word.
The authors tilt at the wrong windmill --not realizing they are too late: the privacy for health data in electronic systems is already GONE. We hope they will join us and work to RESTORE Americans' longstanding ethical and legal rights to health privacy--regardless of a "public plan" or whether it turns into "single payer".
Sunday, May 17, 2009
HIMSS & Who is Promoting HIT in Stimulus Spending?
This story tells how HIMSS and Harvard's Blackford Middleton promoted spending billions on health IT in the stimulus bill.
HIMSS and Blackford believe that health technology will be the silver bullet that enables healthcare reform and kills/slows higher costs. That may be possible, but is highly doubtful because the billions are such a bonanza for the health IT industry.
Will this be yet another example of the stimulus billions being used to prop up large corporations, but not to save individual patients who are sick?
Not only does most of health IT vendor industry NOT care about whether healthcare reform succeeds or not, they actively fought to weaken Americans' rights to privacy and security. By law, industry cares about maximizing revenue, not treating the sick.
So the BIG question is: will the government require all electronic health records systems to have the tough privacy and security measures the public expects and needs to trust these systems? Will the government require electonic health systems to build in our legal and ethical rights to privacy up front?
Most of the HIT industry lobbied to sell the same old dinosaur products and against privacy. The incumbents are very powerful and not interested in change OR IN OUR PRIVACY RIGHTS.
HIMSS and Blackford believe that health technology will be the silver bullet that enables healthcare reform and kills/slows higher costs. That may be possible, but is highly doubtful because the billions are such a bonanza for the health IT industry.
Will this be yet another example of the stimulus billions being used to prop up large corporations, but not to save individual patients who are sick?
Not only does most of health IT vendor industry NOT care about whether healthcare reform succeeds or not, they actively fought to weaken Americans' rights to privacy and security. By law, industry cares about maximizing revenue, not treating the sick.
So the BIG question is: will the government require all electronic health records systems to have the tough privacy and security measures the public expects and needs to trust these systems? Will the government require electonic health systems to build in our legal and ethical rights to privacy up front?
Most of the HIT industry lobbied to sell the same old dinosaur products and against privacy. The incumbents are very powerful and not interested in change OR IN OUR PRIVACY RIGHTS.
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