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 data. Show all posts
Showing posts with label data. Show all posts
Monday, October 19, 2009
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.
Friday, September 25, 2009
De-identified? Yeah, right.
See these articles:
Netflix Contest Seen As Posing Privacy Risk
Netflix is about to commit a privacy Valdez with its customers' viewing data
AOL, Netflix and the end of open access to research data
Once again Netflix plans to violate the privacy of those who rate the movies they rent. Two University of Texas computer scientists demonstrated that the Netflix database of 500,000 with movie ratings could be re-identified, revealing sensitive political and sexual preferences of the actual people who rated movies. Netflix did not get the consent of renters to expose their ratings to the public or ot researchers.
Yet Netflix is moving ahead to release even MORE personal data for its next million-dollar contest. The major media (NYT's STeve Lohr for example) has NOT reported at all on how Netflix is violating movie renters' privacy, but instead trumpets the prizes paid to those who develop more accurate ways to predict which movies you will want to watch next.
The problem of re-identification is VERY serious for the healthcare system because health data is impossible to de-identify. It is so rich in detail that de-identification is almost impossible.
Today, the treasure trove of all Americans' sensitive health data is being endlessly used and disclosed without informed consent to millions of "covered entities" and "business associates" (and their millions of employees)--subjecting EVERY American to the theft, sale, and misuse of the most sensitive personal information that exists.
Who will hire you knowing all about your prescriptions, illnesses and genes?
Netflix Contest Seen As Posing Privacy Risk
Netflix is about to commit a privacy Valdez with its customers' viewing data
AOL, Netflix and the end of open access to research data
Once again Netflix plans to violate the privacy of those who rate the movies they rent. Two University of Texas computer scientists demonstrated that the Netflix database of 500,000 with movie ratings could be re-identified, revealing sensitive political and sexual preferences of the actual people who rated movies. Netflix did not get the consent of renters to expose their ratings to the public or ot researchers.
Yet Netflix is moving ahead to release even MORE personal data for its next million-dollar contest. The major media (NYT's STeve Lohr for example) has NOT reported at all on how Netflix is violating movie renters' privacy, but instead trumpets the prizes paid to those who develop more accurate ways to predict which movies you will want to watch next.
The problem of re-identification is VERY serious for the healthcare system because health data is impossible to de-identify. It is so rich in detail that de-identification is almost impossible.
Today, the treasure trove of all Americans' sensitive health data is being endlessly used and disclosed without informed consent to millions of "covered entities" and "business associates" (and their millions of employees)--subjecting EVERY American to the theft, sale, and misuse of the most sensitive personal information that exists.
Who will hire you knowing all about your prescriptions, illnesses and genes?
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."
Tuesday, June 23, 2009
On HealthDataRights.org and their Declaration
HealthDataRights.org supports only ACCESS to personal health data--which is a no-brainer and a right Americans have always had. The stimulus bill makes clear that we all have the right to copies of our electronic health records because some providers have make them so hard to get.
But HealthDataRights does NOT support the most critical right of all: the right to CONTROL who can access and use our personal health data in electronic systems. They even claim "privacy" stops data flow and will stop research--which is a lie. Informed consent and control over our own data ensures it's there when we want it and ONLY for uses or research that we agree with.
HealthDataRights.org is a faux consumer rights organization, as revealed in their FAQs:
• "The organizers of HealthDataRights.org include doctors, researchers, software developers, writers, entrepreneurs, health economists, and many others who share a common goal of greater health data availability." TO WHOM WILL THE ENTIRE NATION'S DATA BE AVAILABLE? TO THE DATA MINING AND RESEARCH INDUSTRIES THAT WANT OPEN ACCESS TO OUR DATA FOR USES WE HAVE NO CONTROL OVER.
• "Some of us have seen clearly how restrictions on health data and medical records can lead to great pain and suffering—needlessly, in most cases." MILLIONS OF PATIENTS EVERY YEAR SEE CLEARLY HOW DANGEROUS HEALTHCARE IS WITHOUT PRIVACY AND DELAY OR REFUSE CARE, LEADING TO DEATHS FROM CANCER, PTSD, AND DEPRESSION---COSTING FAR MORE THAN IF TIMELY OR PREVENTIVE CARE WAS PRIVATE.
• "At the same time, we know that too often “privacy” is used as an inappropriate excuse to keep people from gaining access to their own health data and information, which they have every right under HIPAA and most state laws to view and access." CLAIMING PRIVACY AS AN EXCUSE NOT TO GIVE ACCESS TO PERSONAL HEALTH DATA IS WRONG OF COURSE, BUT WORSE AND FAR MORE DAMAGING IS EXPOSING HEALTH DATA TO THEFT, SALE, AND MISUSE BY MILLIONS OF HEALTH-RELATED BUSINESSES AND ALL GOVERNMENT AGENCIES.
• "Does this Declaration suggest people should have exclusive rights to their data?
"No, we are not suggesting that, although this is a thorny issue. Doctors need accurate information about their patients and are required by law to maintain this information. Labs are required to hold onto their test results for up to seven years. There are also health care organizations that use their patients’ or members’ data to suggest improvements to the care delivered to them, usually with a blanket permission signed by the patient at the initial visit and later forgotten. This is not necessarily a bad thing and may be very beneficial for patients, even though permission is not sought for each particular instance of that use. In addition, aggregated and anonymized, population data obviously is key to learning what is working for whom, what is cost effective for whom, and what is the best way to treat any condition for whom. We are supportive of organizations that are endeavoring to improve public health by learning from population data. An “exclusive right” could be read as contradictory to that. What we do affirm, strongly, is that people do have a right to their own data."
PATIENTS SHOULD HAVE EXCLUSIVE RIGHTS TO THEIR HEALTH DATA----EVEN NEWT GINGRICH SAYS AMERICANS SHOULD "OWN" THEIR PERSONAL HEALTH DATA.
THIS IS WHERE THEY STATE THAT THE RIGHT TO PRIVACY---THE BASIS OF THE HIPPOCRATIC OATH AND OUR STRONG EXISTING LEGAL RIGHTS TO PRIVACY---WOULD "BE CONTRADICTORY" TO PUBLIC HEALTH RESEARCH. PUBLIC HEALTH DATA IS COLLECTED BECAUSE OF LAWS THAT WERE DEBATED BEFORE BEING PASSED. BUT FUTURE "POPULATION HEALTH" RESEARCH USING ELECTRONIC HEALTH SYSTEMS WILL TAKE PLACE WITHOUT CONSENT BECAUSE EVERY ELECTRONIC HEALTH RECORD WILL BE "WIRED" FOR DATA MINING WITHOUT PATIENT KNOWLEDGE OR CONSENT. RESEARCH WITHOUT CONSENT VIOLATES MEDICAL ETHICS AND INTERNATIONAL TREATIES.
• Who is funding HealthDataRights.org?
HealthDataRights.org is entirely volunteer and has no funding. Any direct costs are being paid out of pocket by the individuals involved. THE INDIVIDUALS' NAMES ARE NOT LISTED.
You can see the story on HealthDataRights.org debut at: http://www.patientprivacyrights.org/site/News2?page=NewsArticle&id=9475&news_iv_ctrl=-1
But HealthDataRights does NOT support the most critical right of all: the right to CONTROL who can access and use our personal health data in electronic systems. They even claim "privacy" stops data flow and will stop research--which is a lie. Informed consent and control over our own data ensures it's there when we want it and ONLY for uses or research that we agree with.
HealthDataRights.org is a faux consumer rights organization, as revealed in their FAQs:
• "The organizers of HealthDataRights.org include doctors, researchers, software developers, writers, entrepreneurs, health economists, and many others who share a common goal of greater health data availability." TO WHOM WILL THE ENTIRE NATION'S DATA BE AVAILABLE? TO THE DATA MINING AND RESEARCH INDUSTRIES THAT WANT OPEN ACCESS TO OUR DATA FOR USES WE HAVE NO CONTROL OVER.
• "Some of us have seen clearly how restrictions on health data and medical records can lead to great pain and suffering—needlessly, in most cases." MILLIONS OF PATIENTS EVERY YEAR SEE CLEARLY HOW DANGEROUS HEALTHCARE IS WITHOUT PRIVACY AND DELAY OR REFUSE CARE, LEADING TO DEATHS FROM CANCER, PTSD, AND DEPRESSION---COSTING FAR MORE THAN IF TIMELY OR PREVENTIVE CARE WAS PRIVATE.
• "At the same time, we know that too often “privacy” is used as an inappropriate excuse to keep people from gaining access to their own health data and information, which they have every right under HIPAA and most state laws to view and access." CLAIMING PRIVACY AS AN EXCUSE NOT TO GIVE ACCESS TO PERSONAL HEALTH DATA IS WRONG OF COURSE, BUT WORSE AND FAR MORE DAMAGING IS EXPOSING HEALTH DATA TO THEFT, SALE, AND MISUSE BY MILLIONS OF HEALTH-RELATED BUSINESSES AND ALL GOVERNMENT AGENCIES.
• "Does this Declaration suggest people should have exclusive rights to their data?
"No, we are not suggesting that, although this is a thorny issue. Doctors need accurate information about their patients and are required by law to maintain this information. Labs are required to hold onto their test results for up to seven years. There are also health care organizations that use their patients’ or members’ data to suggest improvements to the care delivered to them, usually with a blanket permission signed by the patient at the initial visit and later forgotten. This is not necessarily a bad thing and may be very beneficial for patients, even though permission is not sought for each particular instance of that use. In addition, aggregated and anonymized, population data obviously is key to learning what is working for whom, what is cost effective for whom, and what is the best way to treat any condition for whom. We are supportive of organizations that are endeavoring to improve public health by learning from population data. An “exclusive right” could be read as contradictory to that. What we do affirm, strongly, is that people do have a right to their own data."
PATIENTS SHOULD HAVE EXCLUSIVE RIGHTS TO THEIR HEALTH DATA----EVEN NEWT GINGRICH SAYS AMERICANS SHOULD "OWN" THEIR PERSONAL HEALTH DATA.
THIS IS WHERE THEY STATE THAT THE RIGHT TO PRIVACY---THE BASIS OF THE HIPPOCRATIC OATH AND OUR STRONG EXISTING LEGAL RIGHTS TO PRIVACY---WOULD "BE CONTRADICTORY" TO PUBLIC HEALTH RESEARCH. PUBLIC HEALTH DATA IS COLLECTED BECAUSE OF LAWS THAT WERE DEBATED BEFORE BEING PASSED. BUT FUTURE "POPULATION HEALTH" RESEARCH USING ELECTRONIC HEALTH SYSTEMS WILL TAKE PLACE WITHOUT CONSENT BECAUSE EVERY ELECTRONIC HEALTH RECORD WILL BE "WIRED" FOR DATA MINING WITHOUT PATIENT KNOWLEDGE OR CONSENT. RESEARCH WITHOUT CONSENT VIOLATES MEDICAL ETHICS AND INTERNATIONAL TREATIES.
• Who is funding HealthDataRights.org?
HealthDataRights.org is entirely volunteer and has no funding. Any direct costs are being paid out of pocket by the individuals involved. THE INDIVIDUALS' NAMES ARE NOT LISTED.
You can see the story on HealthDataRights.org debut at: http://www.patientprivacyrights.org/site/News2?page=NewsArticle&id=9475&news_iv_ctrl=-1
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".
Tuesday, May 19, 2009
Data-mining: Australia Just Calls It Something Else
In Australia, the data mining industry pays doctors to sell patients' prescription records. In the US they pay pharmacies, hospitals, and PBMs. See Article.
A complaint to the Australian Privacy Commissioner was dismissed because the data miners claimed that patients and doctors were "de-identified". But it is very difficult to fully de-identify personal health data so that re-identification is impossible. If true, the industry should have offered proof that their methods actually work and that the data cannot be re-identified.
As in the US, the theft and sale of personal prescription records is rationalized with claims that it can be used to "provide valuable insight into healthcare trends-- including the spread of infectious diseases". The word that describes using data to provide "valuable insights" is "research". It happens to be both illegal and unethical to do research without informed consent.
A complaint to the Australian Privacy Commissioner was dismissed because the data miners claimed that patients and doctors were "de-identified". But it is very difficult to fully de-identify personal health data so that re-identification is impossible. If true, the industry should have offered proof that their methods actually work and that the data cannot be re-identified.
As in the US, the theft and sale of personal prescription records is rationalized with claims that it can be used to "provide valuable insight into healthcare trends-- including the spread of infectious diseases". The word that describes using data to provide "valuable insights" is "research". It happens to be both illegal and unethical to do research without informed consent.
Monday, May 11, 2009
First HIT Policy Committee Meeting on Stripping Privacy Away?
No surprise the new HIT Policy committee is gearing up to eliminate privacy, i.e. patient control over personal health information, using the excuse that the entire nation's records are needed for biosurveillance and research without informed consent. See the quotes from Drs Calman and Clark. The title of the article says it all: "Committee studies public health, research".
The committee is dominated by industry appointees who will make sure the policies they come up with grant unfettered government and industry access to Americans' most sensitive personal data, from prescriptions to DNA.
What they don't get is they will lose the public's support and trust if they build a system where everyone's health records can be data mined for any research purpose. A Westin/Harris IOM poll found only 1% of the public would allow researchers unfettered access to their electronic medical records. The government and the research community are completely at odds with the public's rights to health privacy.
The reality is millions of Americans already refuse to participate in healthcare systems that harm them because they have no control over their medical records.
HHS noted in the Preamble to the HIPAA Privacy Rule that 600,000 Americans/year avoid early diagnosis and treatment for cancer because treatment records are not private private. Two million people/year with mental illness avoid diagnosis and treatment for the same reason: their records are not private. The Rand Corporation found that 150,000 Iraqi vets refuse treatment for PTSD because their treatment is not private, resulting in the highest rate of suicide in active duty military personnel in 30 years.
Can this commitee face reality when they have severe conflicts of interest and want the use of Americans' health data?
The lack of privacy drives millions away from healthcare. And the lack of privacy causes suffering and death--bad outcomes.
It looks like patients' and consumers' best hope for preserving their health privacy rights in electronic systems may be Gayle Harrell. She may be the only committee member who can face reality.
The committee is dominated by industry appointees who will make sure the policies they come up with grant unfettered government and industry access to Americans' most sensitive personal data, from prescriptions to DNA.
What they don't get is they will lose the public's support and trust if they build a system where everyone's health records can be data mined for any research purpose. A Westin/Harris IOM poll found only 1% of the public would allow researchers unfettered access to their electronic medical records. The government and the research community are completely at odds with the public's rights to health privacy.
The reality is millions of Americans already refuse to participate in healthcare systems that harm them because they have no control over their medical records.
HHS noted in the Preamble to the HIPAA Privacy Rule that 600,000 Americans/year avoid early diagnosis and treatment for cancer because treatment records are not private private. Two million people/year with mental illness avoid diagnosis and treatment for the same reason: their records are not private. The Rand Corporation found that 150,000 Iraqi vets refuse treatment for PTSD because their treatment is not private, resulting in the highest rate of suicide in active duty military personnel in 30 years.
Can this commitee face reality when they have severe conflicts of interest and want the use of Americans' health data?
The lack of privacy drives millions away from healthcare. And the lack of privacy causes suffering and death--bad outcomes.
It looks like patients' and consumers' best hope for preserving their health privacy rights in electronic systems may be Gayle Harrell. She may be the only committee member who can face reality.
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