The Changing Landscape – The Impact to Patients’ Privacy

Both President Bush and President Obama agree that every American should have an electronic health record by 2014. Congress agrees too and has poured $27 billion into digitizing the healthcare system.  Using data instead of paper records, technology tools can analyze mountains of health information to understand what treatments work best for each of us, improve quality, facilitate research, and lower costs. Strong support for electronic health records systems and health data exchanges is bipartisan.

But the systems being funded have major, potentially fatal design flaws which are NOT being addressed by either party:

-Patients have no control over who sees or sells sensitive personal health information.

-Comprehensive, effective data security measures are not in use; 80% of health data is not even encrypted.

-Health data is held in hundreds or thousands of places we have never heard of because of hidden data flows.

-Hundreds of thousands of employees of corporations, third parties inside and outside the healthcare system, researchers, and government agencies can easily obtain and use our personal health information, from prescription records to DNA to diagnoses.

-There is no “chain of custody” for our electronic health data.

The consequences of the lack of meaningful and comprehensive privacy and security protections for sensitive health data are alarming. Over 20 million patients have been victims of health data breaches – these numbers will only increase. Millions of patients each year are victims of medical ID theft, which is much harder to discover and much more costly than ID theft. Such easy access to health data by thousands of third parties is causing an explosion of healthcare fraud (see FBI press release on $100M Armenian-American Fraud ring: http://www.fbi.gov/newyork/press-releases/2010/nyfo101310.htm). Equally alarming, this lack of privacy can cause bad health outcomes, millions of people every year avoid treatment because they know their health data is not private:

-HHS estimated that 586,000 Americans did not seek earlier cancer treatment due to privacy concerns. 65 Fed. Reg. at 82,779

-HHS estimated that 2,000,000 Americans did not seek treatment for mental illness due to privacy concerns. 65 Fed. Reg. at 82,777

-Millions of young Americans suffering from sexually transmitted diseases do not seek treatment due to privacy concerns. 65 Fed. Reg. at 82,778

-The Rand Corporation found that 150,000 soldiers suffering from PTSD do not seek treatment because of privacy concerns. “Invisible Wounds of War”, The RAND Corp., p.436 (2008). Lack of privacy contributes to the highest rate of suicide among active duty soldiers in 30 years.

Public distrust in electronic health systems and the government will only deepen unless these major design flaws are addressed.

The President’s Consumer Privacy Bill of Rights shows he knows that trust in the Internet and electronic systems must be assured. The same principles that will ensure online trust must also be built into the healthcare system — starting with Principle #1:

“Consumers have a right to exercise control over what personal data companies collect from them and how they use it.”

Organics industry and privacy industry face similar labeling issues

See the full article in the New York Times at Has ‘Organic’ Been Oversized?

Like the food industry’s label for “organic” foods, the health technology industry wants to label or brand its products, like electronic records systems, data exchanges, health “apps”, and etc as “privacy-protective”.  Regardless of how far from reality that designation is.

This story shows that the federal law setting up an “organic” certification panel for food requires a FAR greater number of consumer and academic seats on the panel than are on the two National Health IT Policy and Standards Committees.  The organic certification panel requires the appointment of “four farmers, three conservationists, three consumer representatives”, for a total of 15 seats for non-industry representatives. But the federal government appointed industry people to those seats anyway. The federal govt. also appointed people who do not represent consumers or consumer organizations to the few consumer seats on the National Health IT Policy and Standards Committees.

But people who want health privacy are a huge percentage of the public: polls show between 75-95% of the public. This is a far greater percentage of the public than buy “organic” food.  Health privacy is not an ‘elitist’ product, as “organic” foods are perceived to be. Everyone is affected  by the lack of control over their health data and everyone cares about it.

A few key quotes from the story:

-The fact is, organic food has become a wildly lucrative business for Big Food and a premium-price-means-premium-profit section of the grocery store. The industry’s image — contented cows grazing on the green hills of family-owned farms — is mostly pure fantasy. Or rather, pure marketing. Big Food, it turns out, has spawned what might be called Big Organic.

-“The board is stacked,” Mr. Potter says. “Either they don’t have a clue, or their interest in making money is more important than their interest in maintaining the integrity of organics.”  He calls the certified-organic label a fraud and refuses to put it on Eden’s products.

-BIG FOOD has also assumed a powerful role in setting the standards for organic foods. Major corporations have come to dominate the board that sets these standards.

-As corporate membership on the board has increased, so, too, has the number of nonorganic materials approved for organic foods on what is called the National List.Today, more than 250 nonorganic substances are on the list, up from 77 in 2002.

-This sounds like the way the National Health IT Policy And Standards Committees operate:

o   The organic certification board has 15 members, and a two-thirds majority is required to add a substance to the list. More and more, votes on adding substances break down along corporate-independent lines, with one swing vote.

o   Six board members, for instance, voted in favor of adding ammonium nonanoate, a herbicide, to the accepted organic list in December. Those votes came from General Mills, Campbell’s Soup, Organic Valley, Whole Foods Market and Earthbound Farms, which had two votes at the time.

-CORPORATE APPOINTEES FILL CONSUMER SEATS, just like on the Health IT Policy And Standards Committees:

o   The Organic Foods Act calls for a board consisting of four farmers, three conservationists, three consumer representatives, a scientist, a retailer, a certification agent and two “handlers,” or representatives of companies that process organic food.

o   Cornucopia has challenged the appointment of Ms. Beck, the national organic program manager at Driscoll’s, to a seat that is, by law, supposed to be occupied by a farmer. Officially, “farmer” means someone who “owns or operates an organic farm.”   But Ms. Beck does not own or operate a farm.

§  Driscoll’s nominated Ms. Beck for one of the handler seats — but Tom Vilsack, the agriculture secretary, appointed her to one of the seats reserved for farmers.

§  In contrast, Dominic Marchese, who produces organic beef in Ohio, has tried and failed three times to win a board appointment as a farmer.

o   Similarly, the three consumer seats have never been filled by anyone from a traditional consumer advocacy group like the Organic Consumers Association orthe Consumers Union. Instead, those seats have largely gone to academics with agricultural expertise and to corporate executives.

o   Katrina Heinze, a General Mills executive, was appointed to serve as a consumer representative on the board in December 2005 by Mike Johanns, the agriculture secretary at the time. The outcry over her appointment by advocates and independent organic consumers was so intense that she resigned inFebruary 2006 — but rejoined the board late that year after Mr. Johanns appointed her to the seat designated by law for an expert in toxicology, ecology or biochemistry.

To learn more about preventing health privacy issues and protecting your privacy, please visit our Health Privacy Summit website.

Patient Privacy Rights Calls for Patient Control Over Data Exchange on the Nationwide Health Information Network (NwHIN)

In our comments about the NwHIN, Patient Privacy Rights (PPR) urged the Office of the National Coordinator for Health IT (ONC) to use this critical opportunity to address the fatal privacy and security flaws in current systems and state and federal data exchanges. “Multi-stakeholder” public-private governance at the state and federal level has failed to gain public trust.  Public-private governance assures that industry, research, and government interests trump the public’s rights to health information privacy.

To restore public trust, PPR strongly believes:

  • All state and federal data exchanges should be certified to assure that patients control the exchange of their health data. Privacy certification should be designed by a non-profit, patient-led organization with expertise in health privacy;
  • Data should only be exchanged using the Direct Project for secure email between patients, physicians, and other health professionals (with rare exceptions);
  • Patients should always give meaningful informed consent before their information is disclosed; and
  • Sensitive personal health information should only flow to those directly involved in an individual’s treatment, or to those who are conducting research in which an individual has agreed to participate.

Without a network designed to make sure individuals decide who sees their health records, Americans will grow even more wary of seeking needed treatment. We urge the ONC to act now to create a nationwide network that requires comprehensive data privacy and security measures to protect patients’ intimate personal health data. See comments here.

Health Care Reform: Let’s Not Forget Privacy And Data Security

See the full article at Forbes.com: Health Care Reform: Let’s Not Forget Privacy And Data Security

The Affordable Care Act poses many new threats to patient privacy due to an already over loaded health care system. The influx of new consumers in this market will cause much stress on the already insufficient data privacy infrastructure. Bob Gregg, guest writer for Forbes.com, explains the strains and consequences caused by this new legislation.

“The Supreme Court’s decision to uphold the Affordable Care Act could guarantee health insurance coverage for the majority of the 50 million Americans who are now uninsured. While laudable in theory, this legislation doesn’t account for the strain these millions of new patients will have on an already overburdened healthcare ecosystem, especially when it comes to patient privacy and data security.”

Mr. Gregg looked to Patient Privacy Rights’ own founder, Dr. Deborah Peel, to explain what kind of ramifications this act will have for patients and their data privacy.

“My friend, Dr. Deborah Peel, founder of Patient Privacy Rights, tells me that “patients have no control over who sees or sells personal health information. Our health data is held in hundreds or thousands of places we have never heard of because of hidden data flows.” Thousands of people, including researchers and government agencies, she says, have easy access to this information.”

The article goes on to list the four major issues this new burden on the health care system will cause and how it will affect consumers. The bottom line, he says, is “…The Affordable Care Act is designed to make healthcare available to the masses. But that availability comes at a price. Healthcare providers will have to shift tight budgets toward patient care and away from protecting patient privacy, leaving Americans vulnerable to the increasing frequency and cost of data breaches, medical identity theft, and fraud. Combine that with the HITECH Act, federal legislation that pushes healthcare providers into adopting EHR systems, and you have a perfect storm for unintended consequences surrounding patient privacy and data security.”

For even more information on how you can help keep patient data private visit our International Summit on the Future of Health Privacy website.

How a Lone Grad Student Scooped the Government and What It Means for Your Online Privacy

See the full article at ProPublica.org: How a Lone Grad Student Scooped the Government and What It Means for Your Online Privacy

Sobering.  Silicon Valley decides what privacy rights we have online, in clouds, in electronic health systems, in apps, on social media, and on mobile devices. Our fundamental Constitutional rights to privacy—to control personal information about our lives, minds, and bodies—is defended by lone grad students, European Data Commissioners, a few small privacy advocacy organizations, the FTC, and a handful of whistleblowers.

A PREDICTION: Selling intimate cyber-profiles will end when the public discovers that NOTHING about their minds and bodies is private.

The lack of control over sensitive health data will be the nation’s wake-up call to rein in Silicon Valley and restore the right to be ‘let alone’. See: Olmstead v. United States, 277 U.S. 438, 478, 48 S.Ct. 564, 572 (1928) (Brandeis J., dissenting).

  • Cyber-profiles of our minds and bodies contain far more sensitive information than mothers, lovers, friends, Rorschach tests, or psychoanalysts could ever reveal.
  • “If you are not paying for it, you’re not the customer; you’re the product being sold”, see Andrew Lewis at: http://www.metafilter.com/user/15556.
  • 35-40% of us are “Health Privacy Intense”—-a very large minority; see Westin’s keynote slides from the 1st International Summit on the Future of Health Privacy:http://tiny.cc/9alvgw

THE TIPPING POINT will be when the public discovers that electronic health systems facilitate cyber-theft, data mining, data sales, ‘research’ without consent, and allow thousands of strangers to snoop in millions of patient records (think George Clooney and more: http://www.foxnews.com/story/0,2933,348988,00.html).

Health data is the most sensitive personal information on Earth. Everything from prescription records to DNA to diagnoses are HOT BUTTONS.

Instead of enabling patients to decide which physicians or researchers they want to see their health records, corporate and government data holders decide who can use and sell Americans’ sensitive health data—-upending centuries of law and ethics based on the Hippocratic Oath, which requires physicians to ask consent before disclosing any information.

ACC privacy breach victim ‘felt suicidal’

See the full article at Radio New Zealand: ACC privacy breach victim ‘felt suicidal’

This story is about a the effects of a data breach on New Zealand woman with very sensitive information in her electronic health records.

Like “Julie” who told the story of how her mental health records were exposed throughout Partners Healthcare system, the New Zealand woman is also a victim of sexual abuse. The New Zealand corporation holding her data sent it to someone else along with information on thousands of other people.

Similar to the experiences reported by US victims of health data breaches, the response to her data breach was underwhelming and irrelevant to the resulting damages: ie, emotional damage, loss of trust in the data holder, and no compensation for future ID theft or medical ID theft. No assurances or remediation were offered against future use or sale of her information, even though it often takes years to discover ID theft and medical ID theft. She was offered $250 as compensation, and the data holding corporation stated the amount was  “based on the extent of the breach and the level of harm or potential harm associated with it, as well as the client’s individual circumstances.” Clearly an inadequate, insensitive response.

Apparently inadequate, ineffective, insensitive responses to data breaches occur across the globe.

In the US, there is no “chain of custody” for any sensitive personal information and no way to control who gets it.  There is no way to track or prevent the flow of health information to hidden data users and thieves. BUT, you can help by adding to the map of hidden flows at theDataMap.org. US patients can’t weigh the risks vs. benefits of using electronic health systems without knowing who has copies of personal health records, from prescription records to DNA to diagnoses. WE don’t know if it is sold as intimate health profiles, used for ‘research’ or ‘data analytics’, for fraud, for extortion, or for ID or medical ID theft, etc, etc.

In the US, few Congressional leaders fight to restore patient control over health data and to ensure data security. Most in Congress votes for the hidden data mining industry against the public interest and against patients’ rights to health information privacy. Two leaders, the co-chairs of the House Privacy Caucus, Representatives Barton and Markey, received “Louis D. Brandeis Privacy Awards” at the 2nd International Summit on the Future of Health Privacy in Washington, DC on June 6th. See: www.healthprivacysummit.org or http://tiny.cc/nrhkgw for the agenda. The video of the Celebration of Privacy will soon be posted there.

Electronic health information is THE most valuable personal information on Earth—and US corporations and government see and use it without our knowledge or consent to make decisions about us. Tell Congress to put you in control over who can see your sensitive electronic health information—-to protect your job, reputation, and your children’s futures.

2-part story on “Julie” who spoke at the 2nd International Summit on the Future of Health Privacy

See the stories written by Joe Conn at ModernHealthcare.com: ‘Julie’ learns that privacy is more illusion than reality & How ‘Julie’ got a big surprise about medical records privacy

These stories matter for many reasons, not the least of which is that Partners is switching to Epic EHRs and Epic’s CEO has openly opposed data segmentation for years. She claims it’s impossible, too expensive, can’t be done, etc. Partners is about to spend hundreds of millions of dollars on a failed electronic health records system.

The claim that data segmentation cannot be done is incorrect. One example is the open source consent technologies used for over 12 years by many state mental health departments to exchange sensitive mental health and substance abuse data on over 4 million people in over 8 states (the states belong to the NDIIC). Further, the state of MA has very strong laws that require consent for the disclosure of mental health information (actually all 50 states do too).

Why would Partners’ choose a product that fails to protect patient privacy in a such a major way? This will prevent trust in doctors, hospitals, and worst—in ALL electronic systems. Millions of patients/year refuse to seek treatment when they know they cannot control where their data flows. Any HIE or EHR that cannot selectively share data with the patient’s meaningful consent, withhold data without consent, AND withhold erroneous data is a failed system or technology. The refusal of certain health IT companies to build technologies that comply with the law and what patients expect shows very poor judgment.

Who Should Have Access to Mental Health Records?

See the full story in The Globe: Who Should Have Access to Mental Health Records?

“Under federal health privacy laws, patients must sign a standard permission form for providers to share their medical information for purposes of treatment and billing. Policies on sharing psychiatric notes vary.

At Beth Israel Deaconess Medical Center, for example, psychiatrists decide whether to put notes in a locked area of the record, which other doctors can see only if they provide written justification.

At Partners, patients can ask that notes be restricted, but the organization evaluates the requests on a case-by-case basis. In the case of Julie — who does not want her full name published because she’s worried about being stigmatized — Partners eventually agreed to restrict access to the therapy notes written between 2002 and 2009. But the provider network would not automatically sequester future notes.

Julie told her story during the International Summit on the Future of Health Privacy, held in Washington, D.C. earlier this month and sponsored by advocacy group Patient Privacy Rights and Georgetown University Law Center’s O’Neill Institute for National and Global Health Law.

There is a push in health care policy toward more integration of mental and medical health services to better serve patient needs in all settings. Dr. Thomas Lee, head of the Partners’ physician organization, points to it in this story.

“Schizophrenia and Parkinson’s disease are both biochemical disorders of the brain,” he told Kowalczyk. “Why is one considered mental health and the other medical?’’

The catch is that privacy — trust, really — is paramount in serving people with sensitive mental health concerns. So, what’s the solution? How should records be handled to protect patients and provide the best possible care?”

The Rising Risk of Electronic Medical Records

See the full story at SmartPlanet: The Rising Risk of Electronic Medical Records

This story quotes Lee Tien, Bob Gellman, and me about health information technology, which prevents us from controlling who can see, use, or sell our electronic health data by design—-placing everyone in the nation at risk of job and credit discrimination based on health data.  Current technologies make hidden data flow easy, with no way for patients to opt-out or prevent personal data from flowing to an unlimited number of hidden corporate, government, for-profit research and data analytics users.

“Criminals can buy social security numbers online for about $5 each, but medical profiles can fetch $50 or more because they give identity thieves a much more nuanced look into a victim’s life, said Dr. Deborah Peel, founder of the advocacy group Patient Privacy Rights, which researches data breaches and works for tighter security on people’s personal health records.”

Discrimination causes millions to avoid medical treatment every year. It’s a fact of life with paper medical records too. But electronic health systems enable thousands of strangers to simultaneously access the records of millions of patients, so the theft, sale, and misuse of health data for discrimination, fraud, ID theft, and medical ID theft has skyrocketed. In paper records systems, patient files are kept in locked rooms or filing cabinets, making it hard to use or steal more than a few at a time. Anti-discrimination laws alone aren’t effective—we also need to know who has copies of our health data and be able to control who gets them.

““If the information leaked to an employer, it would have affected their jobs or reputations. All the time I’ve been practicing, it’s been a very important and delicate issue,” Peel said. “There are prejudices associated with psychiatric diagnoses. People have powerful reactions to the names of these things.” … Once genetic profiles are routinely added to the mix, access to electronic health data may predetermine who can get jobs or serve in public office, Peel warned… “If the world looked like that,” Peel said, “Lou Gehrig would never get a contract to be a ball player if the team knew he had a disease that would degenerate his muscles, or Ronald Reagan would never get elected president if they knew dementia ran in his family.””

Strong new laws are needed to prevent our health data from being used or sold without consent.  We should also have a complete ‘chain of custody’, naming every person and organization that has seen or copied our health information. Without these new legal rights, it’s impossible to decide whether the benefits of using health IT outweigh the risks to our future jobs and opportunities, to our kids’ future jobs and opportunities, and to our grandkids’ and relatives’ future jobs and opportunities.

FYI—HIPAA has NOT protected health data privacy since 2002, it is really a ‘Disclosure’ Rule, not a ‘Privacy’ Rule. See how consent, the right to control who can see and use your health information, was eliminated: http://patientprivacyrights.org/media/The_Elimination_of_Consent.pdf

BOTTOM line: existing technology solutions that enable us to control who sees our records are not required. Instead, the stimulus billions are being used to buy ‘Model T Fords’ that prevent patient control over personal data. Government and corporations (inside and outside healthcare) don’t want to ‘ask first’ before taking our most sensitive personal information.

Help build a map to show where health data flows:  Sign up to be a data detective and contribute to mapping the hidden flows of Americans’ health data at: theDataMap.org. A map of health data flow will prove Congress should act NOW to restore personal control over health data.

Electronic Health Records: Balancing Progress and Privacy

See the full story on the Bioethics Forum Blog: Electronic Health Records: Balancing Progress and Privacy

“Regardless of the fate of the Affordable Care Act, it has set in motion a drive toward greater use of information technology, particularly with regard to electronic health records (EHRs). These technologies promise to increase the transmission, sharing, and use of health data across the health care system, thereby improving quality and reducing unnecessary costs. But they do not come without raising serious ethical questions, particularly those related to privacy. This was the topic of the 2nd International Summit on the Future of Health Privacy hosted by Patient Privacy Rights at Georgetown Law School on June 6 and 7. The two-day event brought together national and international experts on health privacy, technology, and law; patient advocates; industry experts; and top governmental officials to discuss whether there is an American health privacy crisis.”

Read more at The Hastings Center Bioethics Forum

Get information and updates about the International Summit on the Future of Health Privacy at www.HealthPrivacySummit.org