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."
Showing posts with label patient. Show all posts
Showing posts with label patient. Show all posts
Tuesday, August 4, 2009
Wednesday, July 22, 2009
Genetic Privacy Debate hits Major League Baseball
The story highlights the use of DNA testing by 'employers'--Major League Baseball franchises. Baseball tests to verify the ages and identities of players from Latin America, but the test samples can also be used to detect familial genetic dieseases such as ALS (which Lou Gehrig had).
• “DNA contains a host of information about risks for future diseases that prospective employers might be interested in discovering and considering,” said Kathy Hudson, the director of the Genetics and Public Policy Center and an associate professor at Johns Hopkins University. “The point of GINA was to remove the temptation and prohibit employers from asking or receiving genetic information.”
The big problem is that the Genetic Information Non-Discrimination Act (GINA) does not stop employers or insurers from receiving or using genetic information. It isn’t enforceable.
Baseball players are not the only ones whose DNA and genetic tests can be used against them--the same thing can happen to all of us.
According to GINA, employers and insurers can't use genetic tests to discriminate against employees or enrollees in health plans, but there is no way to tell whether they do or not. Employers and insurers do not have to inform us if they have copies of our genetic or DNA records.
• Do you think an employer is going to tell you were passed over for a promotion based on your DNA?
GINA is toothless--it forbids bad behavior but there is no way to enforce it.
And Americans' genetic privacy is not protected by HIPAA. HIPAA makes it impossible for any of us to prevent OUR sensitive health information from being used by millions of 'covered entities' and 'business associates' for purposes we would never agree with--including using genetic tests to discriminate againts us.
Face Book users control who sees the personal information they post on their walls, but Americans can't control who sees their electronic health information. What's wrong with this picture?
The rules for spending $19 Billion on health IT are being written now. Now is the time we must press to restore control over OUR personal health data.
Stay tuned--sign up for our alerts and we'll tell you what you can do to save privacy.
• “DNA contains a host of information about risks for future diseases that prospective employers might be interested in discovering and considering,” said Kathy Hudson, the director of the Genetics and Public Policy Center and an associate professor at Johns Hopkins University. “The point of GINA was to remove the temptation and prohibit employers from asking or receiving genetic information.”
The big problem is that the Genetic Information Non-Discrimination Act (GINA) does not stop employers or insurers from receiving or using genetic information. It isn’t enforceable.
Baseball players are not the only ones whose DNA and genetic tests can be used against them--the same thing can happen to all of us.
According to GINA, employers and insurers can't use genetic tests to discriminate against employees or enrollees in health plans, but there is no way to tell whether they do or not. Employers and insurers do not have to inform us if they have copies of our genetic or DNA records.
• Do you think an employer is going to tell you were passed over for a promotion based on your DNA?
GINA is toothless--it forbids bad behavior but there is no way to enforce it.
And Americans' genetic privacy is not protected by HIPAA. HIPAA makes it impossible for any of us to prevent OUR sensitive health information from being used by millions of 'covered entities' and 'business associates' for purposes we would never agree with--including using genetic tests to discriminate againts us.
Face Book users control who sees the personal information they post on their walls, but Americans can't control who sees their electronic health information. What's wrong with this picture?
The rules for spending $19 Billion on health IT are being written now. Now is the time we must press to restore control over OUR personal health data.
Stay tuned--sign up for our alerts and we'll tell you what you can do to save privacy.
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".
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.
Wednesday, May 6, 2009
A Start to Securing PHI?
Sometimes press releases for new products tell us far more about the risk of identity theft in electronic health systems than the mainstream press or trade journals.
Check out this zinger quote: "Most organizations don't even know where their PHI is." Why doesn’t the mainstream press tell the public that the health care organizations (like hospitals) have no idea where all their sensitive personal health data resides?
How about this: "The software (Identity Finder) automatically finds PHI such as social security numbers, medical record numbers, dates of birth, driver licenses, personal addresses, and other private data within files, e-mails, databases, websites, and system areas. Once found, the software makes it simple for users or administrators to permanently shred, scrub, or secure the information." Emails? Who sends drivers license numbers, SS#s, and Dates of Birth in emails? Clearly lots of healthcare organizations do.
We can only hope products like this sell.
See full article at http://news.prnewswire.com/DisplayReleaseContent.aspx?ACCT=104&STORY=/www/story/05-05-2009/0005019328&EDATE
Check out this zinger quote: "Most organizations don't even know where their PHI is." Why doesn’t the mainstream press tell the public that the health care organizations (like hospitals) have no idea where all their sensitive personal health data resides?
How about this: "The software (Identity Finder) automatically finds PHI such as social security numbers, medical record numbers, dates of birth, driver licenses, personal addresses, and other private data within files, e-mails, databases, websites, and system areas. Once found, the software makes it simple for users or administrators to permanently shred, scrub, or secure the information." Emails? Who sends drivers license numbers, SS#s, and Dates of Birth in emails? Clearly lots of healthcare organizations do.
We can only hope products like this sell.
See full article at http://news.prnewswire.com/DisplayReleaseContent.aspx?ACCT=104&STORY=/www/story/05-05-2009/0005019328&EDATE
Tuesday, February 24, 2009
From Sharing Music to Sharing Medical Records
Scientific American gets it. Do you? View story here.
Dr. Eric Johnson's latest study is out. Our job is to inform the public and Congress, who are continually being falsely reassured that health IT systems are secure and private by spinmeisters for the insurance, hospital, drug, Health IT, and health data mining industries.
Industry's blatant false promises of security and privacy are something we have been urging FTC to investigate (as false and deceptive trade practices) and the new Administration should understand to ensure that the stimulus funds are not spent on primitive health technologies with abysmal security and no consumer control over PHI. We need 'smart' health IT, 'smart' human processes, and we need the health care industry to step up and use them, so we have trusted electronic systems and don’t waste the stimulus billions.
See Dr. Johnson's paper here.
The research examined samples of health-care data disclosures and search activity in peer-to-peer file sharing networks of the top 10 publicly traded health care firms (using Fortune Magazine's list) over a two-week period. More than 500 hospitals were represented in the 10 organizations. 3,328 files were collected for the study.
•"data losses in the healthcare sector continue at a dizzying pace"
•"Far worse than losing a laptop or storage device with patient data (Robenstein 2008), inadvertent disclosures on P2P networks allow many criminals access to the information, each with different levels of sophistication and ability to exploit the information."
•"Many of the documents were leaked by patients themselves. For example we found several patient-generated spreadsheets containing details of medical treatments and costs--likely for tax purposes."
•"we found a hospital-generated spreadsheet of personally identifiable information on recently-hired employees including social security numbers, contact information, job category, etc"
•"For a hospital system, we found two spreadsheet data bases that contained detailed information on over 20,000 patients including socials security numbers, contact information, and insurance information."
•"For a mental health center, we found patient psychiatric evaluations."
Where is the mainstream and trade journal reporting on this???
Dr. Eric Johnson's latest study is out. Our job is to inform the public and Congress, who are continually being falsely reassured that health IT systems are secure and private by spinmeisters for the insurance, hospital, drug, Health IT, and health data mining industries.
Industry's blatant false promises of security and privacy are something we have been urging FTC to investigate (as false and deceptive trade practices) and the new Administration should understand to ensure that the stimulus funds are not spent on primitive health technologies with abysmal security and no consumer control over PHI. We need 'smart' health IT, 'smart' human processes, and we need the health care industry to step up and use them, so we have trusted electronic systems and don’t waste the stimulus billions.
See Dr. Johnson's paper here.
The research examined samples of health-care data disclosures and search activity in peer-to-peer file sharing networks of the top 10 publicly traded health care firms (using Fortune Magazine's list) over a two-week period. More than 500 hospitals were represented in the 10 organizations. 3,328 files were collected for the study.
•"data losses in the healthcare sector continue at a dizzying pace"
•"Far worse than losing a laptop or storage device with patient data (Robenstein 2008), inadvertent disclosures on P2P networks allow many criminals access to the information, each with different levels of sophistication and ability to exploit the information."
•"Many of the documents were leaked by patients themselves. For example we found several patient-generated spreadsheets containing details of medical treatments and costs--likely for tax purposes."
•"we found a hospital-generated spreadsheet of personally identifiable information on recently-hired employees including social security numbers, contact information, job category, etc"
•"For a hospital system, we found two spreadsheet data bases that contained detailed information on over 20,000 patients including socials security numbers, contact information, and insurance information."
•"For a mental health center, we found patient psychiatric evaluations."
Where is the mainstream and trade journal reporting on this???
Tuesday, January 27, 2009
Pro-Privacy Will Continue to Grow
More and more genuine consumer pro-privacy groups ---as opposed to privacy-lite, industry-supported, faux consumer organizations---are speaking out to restore privacy in electronic health systems. Support for privacy rights will build and build. There may be set-backs, but we cannot be stopped. See this recent article on Consumer Watchdog supporting patient privacy.
The real reason privacy will win is simple and practical: electronic systems will never be trusted or work unless consumers control personal health information.
In the words of Justice Brandeis: "The right to be let alone is the most comprehensive of rights and the right most valued by civilized men. To protect that right, every unjustifiable intrusion by the government upon the privacy of the individual, whatever the means employed, must be deemed a violation of the [Constitution].” Justice Brandeis 1928.
Olmstead v. United States, 277 U.S. 438, 478, 48 S.Ct. 564, 572 (1928) (Brandeis J., dissenting).
Brandeis dissented from the conventional wisdom of his time. Today we are the dissenters from the CW of our time, but like Brandeis' dissent, ours will prevail.
The real reason privacy will win is simple and practical: electronic systems will never be trusted or work unless consumers control personal health information.
In the words of Justice Brandeis: "The right to be let alone is the most comprehensive of rights and the right most valued by civilized men. To protect that right, every unjustifiable intrusion by the government upon the privacy of the individual, whatever the means employed, must be deemed a violation of the [Constitution].” Justice Brandeis 1928.
Olmstead v. United States, 277 U.S. 438, 478, 48 S.Ct. 564, 572 (1928) (Brandeis J., dissenting).
Brandeis dissented from the conventional wisdom of his time. Today we are the dissenters from the CW of our time, but like Brandeis' dissent, ours will prevail.
Tuesday, December 9, 2008
Genomes: Behold or Beware
Patients whose physicians "collaborate" with genetic testing corporations should beware. Today, Navigenics and all genetic testing businesses can legally sell genomic data. There is no way to know which ones sell or use data without informed consent and which don't. Americans' personal health information is extremely valuable to corporate America. Genomic data requires extreme privacy protection because it can be used to harm not only an individual but all his/her relatives.
According to Navigenics, the personal data shared is "aggregated" and "de-linked" from "your account information", but Navigenics offers no proof that it cannot be re-identified.
As we learned from the NIH experience, it is very difficult to "de-identify" or "anonymize" genetic data. The NIH closed a public research data base of "de-identified" genetic data after researchers proved the data could be re-identified See: . Corporations that share "de-identified" or "anonymized" health data should be required to publish the algorithms that were used and prove the data cannot be re-identified.
Questions abound:
• How can anyone be sure that Navigenics protects the privacy of genomic tests without trusted external audits of their privacy practices and policies?
• Does Navigenics pay MDVIP's doctors a "kickback" for "collaborating" each time a patient gets genomic tests? Does MDVIP inform patients that it has a contract with Navigenics and what each doctor is paid?
• Who is being paid for "collaboration"? What exactly are the financial and contractual terms of "collaboration" between MDVIP and Navigenics?
• Do MDVIP's patients really understand the risks of using Navigenics to do the testing or the risks of letting Navigenics share their genomic data with unknown researchers and research organizations----that can put their data into public data respositories and publish it in studies? Or the security risks that a particular public respository can be hacked?
• Are MDVIP's patients coreced into taking Navigenics tests by their doctors? Most patients want to do what their doctors recommend. What is the consent process?
• Did MDVIP contractually sell or give their patients' genomic data or to Navigenics to own or sell? Should the public trust Navigenics, a for-profit corporation, when personal genomic data is a very valuable commodity?
• Should any for-profit collaboration "define the standards in which preventive genomic medicine will be integrated into patient care for decades to come"? No consumer health privacy expertise, assessment, or input was sought.
• There is not yet an operational, trusted, consumer-led privacy certification organization to audit genomic testing corporations to certify they don't sell genomic data and that consumers control sensitive personal genomic data in their data bases. In the absence of a trusted privacy certification organization, the privacy principles developed in 2007 by the bipartisan Coalition for Patient Privacy or the Code of Fair Information Practices could be used as guides for building a genomic testing and preventive healthcare system that consumers will trust and be willing to use.
• Would MDVIP's patients still feel "the experience (was) positive", "empowered rather than anxious", and "desire to change their lifestyles and more productively work with their physicians" if they knew their doctors were paid by Navigenics and their data was sold and/or put in public data repositories with unknown security and privacy protections?
This blog is in response to the article: Physician network to use genomic-based preventive healthcare
According to Navigenics, the personal data shared is "aggregated" and "de-linked" from "your account information", but Navigenics offers no proof that it cannot be re-identified.
As we learned from the NIH experience, it is very difficult to "de-identify" or "anonymize" genetic data. The NIH closed a public research data base of "de-identified" genetic data after researchers proved the data could be re-identified See:
Questions abound:
• How can anyone be sure that Navigenics protects the privacy of genomic tests without trusted external audits of their privacy practices and policies?
• Does Navigenics pay MDVIP's doctors a "kickback" for "collaborating" each time a patient gets genomic tests? Does MDVIP inform patients that it has a contract with Navigenics and what each doctor is paid?
• Who is being paid for "collaboration"? What exactly are the financial and contractual terms of "collaboration" between MDVIP and Navigenics?
• Do MDVIP's patients really understand the risks of using Navigenics to do the testing or the risks of letting Navigenics share their genomic data with unknown researchers and research organizations----that can put their data into public data respositories and publish it in studies? Or the security risks that a particular public respository can be hacked?
• Are MDVIP's patients coreced into taking Navigenics tests by their doctors? Most patients want to do what their doctors recommend. What is the consent process?
• Did MDVIP contractually sell or give their patients' genomic data or to Navigenics to own or sell? Should the public trust Navigenics, a for-profit corporation, when personal genomic data is a very valuable commodity?
• Should any for-profit collaboration "define the standards in which preventive genomic medicine will be integrated into patient care for decades to come"? No consumer health privacy expertise, assessment, or input was sought.
• There is not yet an operational, trusted, consumer-led privacy certification organization to audit genomic testing corporations to certify they don't sell genomic data and that consumers control sensitive personal genomic data in their data bases. In the absence of a trusted privacy certification organization, the privacy principles developed in 2007 by the bipartisan Coalition for Patient Privacy
• Would MDVIP's patients still feel "the experience (was) positive", "empowered rather than anxious", and "desire to change their lifestyles and more productively work with their physicians" if they knew their doctors were paid by Navigenics and their data was sold and/or put in public data repositories with unknown security and privacy protections?
This blog is in response to the article: Physician network to use genomic-based preventive healthcare
Thursday, October 11, 2007
The Health Record Paparazzi is Above the Law and In Bed With Congress
We learned today that all of us are a bit like George Clooney: the Health Record Paparazzi loves a celebrity, but it loves the average American just as well. Instead of intrusive cameras flashing and TMZ taping our every move, we have insurers, employers, hospitals, doctors, pharmacies, drug companies, marketers, creditors and banks digging around for our most personal, intimate information.
HIPAA protects no one, including movie stars. The HIPAA regulations were changed by a Bush appointee that defy the ancient doctor-patient promise that when a patient goes to their doctor, whatever they share will be kept private. No one can make that guarantee anymore. To see the fine print visit Patient Privacy Rights.
Over 4 million individuals and businesses can see and use our health records, without consent and over objections. HIPAA is so broad it is hard to imagine who doesn’t have a legal right to your most personal details.
The Health Record Paparazzi can be stopped -- but only by an act of Congress. Right now, Congress is working on legislation that will open up your health records even more. Everyone will have control over your health information except the patient.
We must have federal legislation that guarantees our right to control our most personal information and requires meaningful, enforceable penalties for everyone who shares our information without consent.
HIPAA protects no one, including movie stars. The HIPAA regulations were changed by a Bush appointee that defy the ancient doctor-patient promise that when a patient goes to their doctor, whatever they share will be kept private. No one can make that guarantee anymore. To see the fine print visit Patient Privacy Rights.
Over 4 million individuals and businesses can see and use our health records, without consent and over objections. HIPAA is so broad it is hard to imagine who doesn’t have a legal right to your most personal details.
The Health Record Paparazzi can be stopped -- but only by an act of Congress. Right now, Congress is working on legislation that will open up your health records even more. Everyone will have control over your health information except the patient.
We must have federal legislation that guarantees our right to control our most personal information and requires meaningful, enforceable penalties for everyone who shares our information without consent.
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