Will Texans Own Their DNA?

Will Texans Own Their DNA?

Greg Abbott, candidate for Governor, thinks they should

 

On November 12th, Abbott released his “We the People Plan” for Texas. Clearly he’s heard from Texans who want tough new health data privacy protections.

 

Topping his list are four terrific privacy recommendations for health and genetic data:

  • “Recognize a property right in one’s own DNA.”
  • “Make state agencies, before selling database information, acquire the consent of any individual whose data is to be released.”
  • “Prohibit data resale and anonymous purchasing by third parties.”
  • “Prohibit the use of cross referencing techniques to identify individuals whose data is used as a larger set of information in an online data base.”

 

The Omnibus Privacy Rule operationalized the technology section of the stimulus bill. It also clarified that states can pass data privacy laws that are stronger than HIPAA (which is a very weak floor for data protections).

 

Texans would overwhelmingly support the new state data protection laws Abbott recommends . If elected, hopefully Abbott would also include strong penalties for violations. Contracts don’t enforce themselves. External auditing and proof of trustworthy practices should be required.

 

Is this the beginning of a national trend?  I think so.

 

The more the public learns about today’s health IT systems, the more they will reject health surveillance technologies that steal and sell sensitive personal health data.

Don’t Let EHR Vendors Own Your Data

“In a recent blog posting, John Moore and Rob Tholemeier of Chilmark Research ask the question: ‘Who’s Data is it Anyway?’ Your electronic health records data is not the property of your vendor and there are things you can do about it, they contend.”

To view the full article, please visit: Don’t Let EHR Vendors Own Your Data

Abbott’s Privacy Rights Proposals Draw Attention

“Attorney General Greg Abbott‘s support for more stringent privacy laws is getting some notice, as privacy rights activists say his proposals would lead to more protections for Texans. But concerns tied to the enforcement of the proposed policies are also being raised.”

To view the full article, please visit: Abbott’s Privacy Rights Proposals Draw Attention

 

Myth: The Benefits of Electronic Health Records Outweigh the Privacy Risks

Myth: The Benefits of Electronic Health Records Outweigh the Privacy Risks

Fact: It’s impossible to weigh the ‘benefits’ of EHRs vs. the ‘risks’ when we have no way of knowing what all the ‘risks’ are. Current health IT systems and data exchanges enable unlimited hidden use and sale of personal health data.

There is no map that tracks hidden disclosures of health data to secondary, tertiary, quaternary, etc, etc users. It’s crazy, but we have no ‘chain of custody’ for our most sensitive personal information, health data.

How can we make informed decisions about using EHRs when there is no map to track the 100s-1000s-1,000,000s of places our personal health information, from prescriptions to DNA to diagnoses, ends up?

Take a look at this website: http://www.theDataMap.org

·        Harvard Professor Latanya Sweeney leads this project to map the hidden flows of health data.

·        Patient Privacy Rights is a sponsor.

·        Not only is it impossible for individuals to make an informed decision about the risks and benefits of EHRs, but it’s ALSO impossible for Congress to create sane health reform and healthcare laws, formulate appropriate health and privacy policies that provide ironclad data privacy and security protections when we have no idea where PHI goes, who uses and sells it, or what it’s used for.

·        One example of not knowing where/how our personal health data ends up: Identifiable diabetic patient records are sold online for $14-$25 each. See: http://abcnews.go.com/Health/medical-records-private-abc-news-investigation/story?id=17228986&singlePage=true#.UFKTXVHUF-Y

If you think about privacy-destructive health IT,  it is the exact opposite of what patients expect. And it violates patients’ strong existing rights to health information privacy and control over personal health data:

·        One example: Patients give pharmacies a prescription for only one purpose: to fill their prescription. They don’t expect all 55,000 US pharmacies to sell every prescription, every night. The prescription data mining industry sells our easily identifiable prescription records collects 10s-100s of billions in revenue every year.

·        Another example: Patients expect physicians to keep their records private. They don’t expect physicians or EHRs to sell their sensitive data, treating patient data as another way to make money. But selling patient data is the business model of almost all EHRs, including Practice Fusion, Greenway, Cerner, Athena, GE Centricity, etc, etc. Patients give doctors information for one purpose only: to treat them. They don’t expect it to be used and sold by Business Associates, subcontractors, and subcontractors of the subcontractors for other purposes. Again, in the US patients have had a very long history of rights to health information privacy in law and ethics (the Hippocratic Oath).

 

Fact: the public will only trust health technology if they control their health data and can have real-time lists of those who use their health data. Hidden use of personal health data must stop. Users should ask our consent first. We need control, accountability and transparency to trust health technology.

Abbott’s Privacy Rights Proposals Draw Attention

“Attorney General Greg Abbott‘s support for more stringent privacy laws is getting some notice, as privacy rights activists say his proposals would lead to more protections for Texans. But concerns tied to the enforcement of the proposed policies are also being raised.”

To view the full article, please visit: Abbott’s Privacy Rights Proposals Draw Attention

Don’t Let EHR Vendors Own Your Data

“In a recent blog posting, John Moore and Rob Tholemeier of Chilmark Researchask the question: “Who’s Data is it Anyway?” Your electronic health records data is not the property of your vendor and there are things you can do about it, they contend.”

If you have a subscription to HealthData Management and would like the view the full article, please visit: Don’t Let EHR Vendors Own Your Data

Rejecting Billions, SnapChat Expects a Better Offer

To view the full article, please visit: Rejecting Billions, SnapChat Expects a Better Offer

SnapChat made front page of NYTimes this morning valued at BILLIONS by WallStreet! This is huge news: the very first privacy app worth billions! If people/industry value control over pictures IMAGINE how many millions of people would want privacy apps to control health data!

Court of Appeals hearing case on potential Privacy Rights Suit

New York’s Highest Court is hearing arguments Tuesday on whether or not a patient can sue a Steuben County Clinic for a violation of his privacy rights.

To view the full article, please visit Court of Appeals hearing case on potential Privacy Rights Suit.

Information Asymmetry – The Politics of Health IT Policy

Let’s recognize Healthcare.gov as the dawn of mass patient engagement – and applaud it. Before this website, patients were along for the ride. Employers choose most of the insurance benefits, hospital web portals are an afterthought, and getting anything done with an insurance company, for both doctors and patients, means a phone call and paper. Can you imagine going online to find out the actual cost and buy anything? All that changed with Healthcare.gov.

Information is valuable and not evenly distributed. The haves are immensely valuable corporations. The have nots are patients and doctors. Welcome to the world of health IT politics where the rich get richer ($20 Billion of “incentives” have caused massive health IT consolidation and a hidden health surveillance state) and the poor get frustrated (talk to an independent physician about their EHR or to a patient trying to access her own health records).

Information asymmetry drives $1 Trillion waste of our $2.7 Trillion health care cost. That waste is about $3,000 per year per citizen.

The politics of health IT policy are not left vs. right but institution vs. individual. Politicians and regulators alike are now scrambling to understand the role of health IT policy in that $3,000 annual waste per citizen.

The asymmetry that drives health IT policy is easy to understand when you consider that health IT is sold to corporations. As physicians and patients, we do not prescribe or buy information technology and we are paying the price through a total lack of price and quality transparency.

Incumbent “stakeholders” and multi-$Billion not-for-profit “delivery networks” stand to lose half their revenue if our cost structure aligned with the rest of the developed world. Information asymmetry drives our health IT policy as we implement the Affordable Care Act and the HITECH information technology mandates. From the earliest days, the strategy of costly health IT “certification” seems designed to drive small vendors and open source software out of the market. In the middle ages of post ACA health IT policy, circa 2012, our federal health architecture EHR procurement (the VA and Department of Defense, among others) began wild gyrations that have muted one of the few potential sources of rational, citizen-funded open source health information technology. We are now in the predictive analytics era, as our healthcare “providers” figure out how to manage the physician-patient relationship to their economic advantage. They call it Population Health Management.

Population Health Management doesn’t have to increase information asymmetry. Patient engagement and Fair Information Practice principles are not controversial. Combined with patient-directed automation via Blue Button Plus and NSTIC-style voluntary identities, we can have Big Data analytics to drive health reform policy and population health management. All it takes is democratizing access to our own information and reasserting the primacy of the physician-patient relationship. To get there, our federal and state policymakers will need to use the reduction of information asymmetry as a guiding principle.

The opportunities for policymakers to reduce information asymmetry and engage patients abound:

  • Confirm the patient’s right to access all information using Blue Button Plus so we can delegate that access to the physicians and analytics services we trust.

  • Confirm the patient’s right to specify a voluntary identity for patient matching when we participate in health information exchange.

  • Confirm the patient’s right to a real-time online Accounting of Disclosures so that we can know who is getting our information and see what they’re getting.

  • Confirm the physician’s right to communicate with anyone using Direct secure messages without interference from their employer or a state health information bureaucracy.

We already have these rights under existing law. What we don’t have is regulators and public procurement processes that put consumer protection ahead of politics. It’s time for them to step up. Start by fixing Healthcare.gov with privacy-preserving, voluntary sign-in credentials that we can use with Blue Button Plus to access our hospitals, insurers and state databases without risk of identity theft. There’s $3,000 in it for each of us.

Adrian Gropper, MD is Chief Technical Officer of Patient Privacy Rights and participates in Blue Button+, Direct secure messaging governance efforts and the evolution of patient-directed health information exchange.

Check out the Latest from Dr. Gropper, courtesy of The Healthcare Blog.

A Fraying of the Public/Private Surveillance Partnership

To view the full article, please visit: A Fraying of the Public/Private Surveillance Partnership

The lack of data security and privacy on the ‘HealthCare.gov’ triggered national outrage.For the first time patient privacy is a national issue.

Healthcare.gov’s serious technology flaws sparked huge privacy fears even though ONLY one piece of health data is collected, “Do you smoke?”.

The public now fears that the US government and the health IT industry don’t protect sensitive personal health data. Rightly so. See:

 

But current US health IT systems also enable hidden armies of corporations and government agencies to use sensitive personal health data without patient consent.

If our health data was actually private, how could it be sold on the Internet? Three short videos:

 

We have no map of all the hidden flows of our health data. See examples mapping the hidden flows of US health data:

o   states sell health data: http://thedatamap.org/states.html

o   top buyers of health data: http://thedatamap.org/buyers.html

o   data breaches reveal who purchased health data: http://thedatamap.org/history.html

o   health data is easy to re-identify: http://thedatamap.org/risks.html

The consequences of the lack of patient privacy (control over personal health data) are millions people act to keep health data private:

  • Today 40-50 million people/year act to try to keep health data private:

o   37.5 million people every year hide information to try to keep it private

§  November, 2005. National Consumer Health Privacy Survey, California Healthcare Foundation:http://www.chcf.org/publications/2005/11/national-consumer-health-privacy-survey-2005

o   Over 5 million every year avoid or delay early diagnosis for cancer, mental illness, or sexually-transmitted diseases

§  65 Fed. Reg. at 82,779, 65 Fed. Reg. at 82,777, 65 Fed. Reg. at 82,778

§  Or see page 7: http://patientprivacyrights.org/wp-content/uploads/2010/08/The-Case-for-Informed-Consent.pdf

Technology can ensure all the benefits and prevent harms. The idea that we must surrender privacy forever to ‘wire’ the healthcare system is false.

Technology should “do no harm” to patients. The cure is to use tough privacy-enhancing technologies.