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.
Showing posts with label information. Show all posts
Showing posts with label information. Show all posts
Friday, October 9, 2009
Saturday, August 15, 2009
Healthcare moving to Cloud Computing
Joe Conn looks more deeply into the problems of 'cloud' computing for the storage, exchange, and analysis of health data. See his article in Modern Healthcare: 'Healthcare is slow to change' to cloud environment
Today there is not yet a trusted organization to certify the privacy of electronic health records systems, whether on servers or in clouds.
Until the privacy of health data can be assured first with trusted security certification and then with a separate stringent privacy certification (proving that patients control the use and disclosure of their sensitive records) Americans will not trust that their data is safe.
Proof that consumers control personal data in clouds will be essential for trust in health IT.
So far all we have are promises of security and privacy. We won't trust without verification .
Today there is not yet a trusted organization to certify the privacy of electronic health records systems, whether on servers or in clouds.
Until the privacy of health data can be assured first with trusted security certification and then with a separate stringent privacy certification (proving that patients control the use and disclosure of their sensitive records) Americans will not trust that their data is safe.
Proof that consumers control personal data in clouds will be essential for trust in health IT.
So far all we have are promises of security and privacy. We won't trust without verification .
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
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.
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.
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
Wednesday, April 29, 2009
More than just google
In response to the Consumer Watch article: "U.S. Senate Records Reveal Google Inc. Lobbying Campaign On Personal Medical Records Law Despite Internet Giant's Denials"
This story is of interest because the public has no idea which corporations lobbied against their privacy rights in the stimulus bill or how much was spent overall to try to eliminate health privacy.
The focus on Google alone is misleading and actually distracts from the real work of informing the public about the major health-related industries that have long opposed Americans' privacy rights. The real question is which other industry giants that are not household names lobbied against privacy?
The total lobbying money spent by the massive secret health data mining industry, insurers, hospitals, and big Pharma to oppose Americans' rights to privacy far exceeds Google's lobbying expenses.
If we don’t know who all the culprits are, we can't stop them and restore privacy.
The most dangerous enemies of privacy are the ones we don’t know about.
This story is of interest because the public has no idea which corporations lobbied against their privacy rights in the stimulus bill or how much was spent overall to try to eliminate health privacy.
The focus on Google alone is misleading and actually distracts from the real work of informing the public about the major health-related industries that have long opposed Americans' privacy rights. The real question is which other industry giants that are not household names lobbied against privacy?
The total lobbying money spent by the massive secret health data mining industry, insurers, hospitals, and big Pharma to oppose Americans' rights to privacy far exceeds Google's lobbying expenses.
If we don’t know who all the culprits are, we can't stop them and restore privacy.
The most dangerous enemies of privacy are the ones we don’t know about.
Tuesday, March 10, 2009
Stimulating Health IT
Health Affairs Briefing: Deborah Peel, MD, founder & chair of Patient Privacy Rights, represents consumers in a discussion of Health Information Technology and how to proceed with privacy. Learn more and find how you can attend.
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