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.

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.

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.

Re: “You for Sale, A Data Giant is mapping, and Sharing, the Consumer Genome”

Below comment in response to the New York Times article “You for Sale, A Data Giant is Mapping, and Sharing, the Consumer Genome.”

Acxiom is the poster-child for why tough new laws are needed to protect personal information on the Internet, in electronic systems, and on cell phones ASAP. No data should be collected about Americans without prior meaningful, informed consent.

Natasha Singer’s story is a must read to understand how the use of personal data threaten people’s jobs, reputations, and future opportunities. The information is analyzed and sold to those who want detailed real-time profiles of who we are, including the health of our minds and bodies. Data analytics enable Acxiom to create and sell far more intimate, detailed personality and behavioral portraits than our own mothers or analysts might know about us (and would never share).

Most people have never heard of Acxiom or other hidden data users. Today, most Americans have no idea that personal data is used by thousands of corporations and government agencies to make decisions about whether they will receive jobs or benefits.

Even though the hidden data mining industry began by using personal information to improve marketing and advertising, Acxiom proves that the kind and amounts amount of identifiable data being collected are simply unacceptable. As for the collection of health information, the data mining industry is clearly violating Americans’ very strong legal, Constitutional, and ethical rights to control and keep personal health data private. To the public, this is theft of personal health information.

On June 6th at the 2nd International Summit on the Future of Health Privacy, Professor Latanya Sweeney of the Harvard Data Privacy Lab along with Patient Privacy Rights introduced theDataMap.org. This project will enable citizens and whistleblowers to help create a detailed picture/map of where sensitive personal health information flows, from prescription records, to DNA, to diagnoses. Without a ‘chain of custody’ for our identifiable health data, it’s impossible to know who uses our data or why. A ‘chain of custody’ for personal health data could show us whether potential employers or banks had bought or received our health data, learn about the many ways the federal government uses health data as described in the Federal Health Information Technology Strategic Plans, and see the names of for-profit and public research and public health institutions that use personal health data.

Health data has long been used to discriminate against people for jobs, insurance, and credit. This fact is so well known that every year tens of millions of us refuse to get early diagnoses and treatment for cancer, depression, and sexually transmitted diseases. Hidden data flow causes bad health outcomes; treatment delays can be deadly. We need the same kind of control/consent over the use of electronic health data that we have always had for paper medical records.

US Internet and electronic systems have made us the most intimately surveilled people in the Free World. In Europe, strong laws and privacy-enhancing technologies prevent hidden data collection and data flow, so everyone benefits from technology and harms are avoided.

European standards for the collection of personal data were created after WW II, when data were used to decide who would die. Europeans consequently passed the world’s toughest data privacy laws, preventing personal data from being collected or used without consent.

Europe also established regional Data Privacy Commissioners to defend citizens’ rights to control the collection and use of personal information and ensure data accuracy. The US needs them too.

Unless we know where trillions of bytes of our personal data flow, who uses it and why, we cannot weigh the benefits and risks of using the Internet, electronic systems, or cell phones. It’s time for Congress to end the massive hidden flows of personal data.

Experts discuss technology and privacy protections at 2nd International Summit on the Future of Health Privacy

See full story at: HIPAA remains in play as technology outpaces privacy protections

Speakers from the 2nd International Summit on the Future of Health Privacy were interviewed in this article about their ideas and opinions concerning the outpacing of privacy protections by technology. Because technology is being invented quicker than privacy laws can be written and imposed, people everywhere are at risk of having their private medical records used without their knowledge and consent. On June 6-7, over 50 speakers and 300 participants met up to discuss the issues brought about by such technological advances at the 2nd International Summit on the Future of Health Privacy. To learn more about the Health Privacy Summit, please visit HealthPrivacySummit.org.

“Experts assembled on June 6 in Washington for a panel discussion on electronic medical records and privacy noted that HIPAA provides only a minimum standard for safeguards, not a template for best practices. Panelists at the International Summit on the Future of Health Privacy added that the stakes are high when it comes to EMRs and privacy.

“Electronic technology is a game-changer, legally, because the damage that can be done to someone is perpetual and the damages that can be awarded are incalculable,” said James Pyles, co-founder and principal of the law firm of Powers, Pyles, Sutter & Verville….

…Joy Pritts, chief privacy officer for the Office of the National Coordinator for Health Information Technology, said the main problem is technology is moving faster than privacy laws can be written

“I approach this in a simplistic way,” Pritts said. “I look to see, do you have a right to privacy for your health information? So far, the courts say you do. The tort laws say you do. Standards of professional ethics of nearly every segment of the medical profession say you do. The HIPAA privacy rule does not say that at all.””

Learn more about the Health Privacy Summit here.

Top Experts Discuss Privacy Risks at 2nd International Summit on the Future of Health Privacy

Patient Privacy Rights and Georgetown University Law Center’s O’Neill Institute for National and Global Health Law Host Event

Psychiatry Patient’s Story Highlights Growing Threat to Privacy

WASHINGTON–(BUSINESS WIRE)– When a lawyer named “Julie” sought psychiatric treatment in Boston, she never imagined that the notes of sessions with her therapist would be digitized and made available to thousands of doctors and nurses—even dermatologists and podiatrists with no conceivable need for such private records. But that is precisely what happened. “Personal details that took me years to disclose during therapy are being shared throughout my medical network, against my will,” Julie says. “It’s destroyed my trust with my doctors.”

Julie will tell her story for the first time at the 2nd International Summit on the Future of Health Privacy, to be held in Washington, DC, on June 6-7. Sponsored by Patient Privacy Rights, the nation’s leading health privacy watchdog, and Georgetown University Law Center’s O’Neill Institute for National and Global Health Law, the Summit will explore the often-alarming privacy implications of the nation’s race to digitize patient medical records.

“Every state requires patient permission before sensitive mental health records can be shared with other doctors. But Julie found that hundreds of pages of intimate records, some detailing her abuse as a child, were open to the entire staff of her Boston-based healthcare system,” says Dr. Deborah Peel, founder of Patient Privacy Rights. “Julie is an example of how major electronic health records systems can actually strip patients of their privacy rights. Her tragic story highlights the need for the Privacy Summit—to shine light on these abuses and find solutions to protect patient privacy.”

40 Health-Privacy Experts Drive Debate:

More than 40 health-privacy experts from around the globe will gather for the Summit, including top U.S. government officials and leading CEOs, physicians and academics, along with several hundred live and virtual attendees. Speakers will discuss new policies including a Health Privacy Bill of Rights, data exchanges, secondary uses of health data and social media platforms that threaten patient privacy. In addition, the founder of Harvard’s Data Privacy Lab will announce the launch of a yearlong project, the first of its kind, to map the hundreds of secret organizations and agencies where private medical data is sold and shared in the United States.

Summit organizers also will announce the “The Best Privacy Technologies of 2012,” and companies will demonstrate new products that enhance patient control of personal health data.

Louis D. Brandeis Privacy Award:

To kick off the Summit, Patient Privacy Rights will honor the first-ever recipients of the Louis D. Brandeis Privacy Award. The privacy watchdog group will recognize Congressman Joe Barton (R-TX) and Congressman Ed Markey (D-MA) for their roles as leading congressional privacy advocates. And Alan Westin, Columbia University’s Emeritus Professor of Public Law and Government, and Ross Anderson, the University of Cambridge’s Professor in Security Engineering, will be honored for their groundbreaking work on consumer data privacy and security.

WHAT: The 2nd International Summit on the Future of Health Privacy
WHEN: June 6-7th, 2012
WHERE: Georgetown University Law Center
600 New Jersey Avenue, NW. Hart Auditorium, McDonough Hall
Washington, DC 20001

REGISTRATION: http://www.healthprivacysummit.org/d/3cq92g/4W

AGENDA: http://www.healthprivacysummit.org/d/3cq92g/6X

SPEAKERS: http://www.healthprivacysummit.org/d/3cq92g/6K

FOLLOW US ON TWITTER: @PrivacySummit

SPONSORS/PARTNERS: Accenture, CA Technologies, Dell, e-MDs, FairWarning®, Harvard Data Privacy Lab, IDExperts, Jericho Systems, Microsoft, PwC, RTI International, Telemedicine and Advanced Technology Research Center (TATRC), The O’Neill Institute at Georgetown Law Center, The University of Cambridge Computer Laboratory, The University of Texas School of Information

ABOUT PATIENT PRIVACY RIGHTS: Patient Privacy Rights is the nation’s leading bipartisan health privacy organization and leading consumer voice for building ethical, trustworthy healthcare IT systems. For more information, visit http://patientprivacyrights.org

Contact:
Keith Blackman, 202-730-5753
keith@blackmanmediasolutions.com
or
Jim Popkin, 202-686-6699
jim.popkin@sevenoaksmedia.com

20 Million Affected by Health Breaches

See full story at Govinfosecurity.com: 20 Million Affected by Health Breaches

“The federal tally of individuals affected by major healthcare information breaches since September 2009 now exceeds 20 million. But two recently reported major incidents, estimated to have affected a combined total of more than 675,000, have yet to make the list, which now includes 435 incidents.

As of May 23, the breach list includes 29 incidents in 2012 affecting a total of about 935,000. By far the largest of those breaches is a Utah Department of Health hacking incident affecting 780,000 individuals, including Medicaid clients, Children’s Health Insurance Plan recipients and others.”

Re: Data-Mining in Doctor’s Office Helps Solve Medical Mysteries

The story concludes that “the benefits (of research) outweigh the (privacy) concerns”. But that statement was made by a hospital administrator, not by the patients whose data were used without consent. They weren’t asked or notified.

There are several problems with the idea that the benefits of doing research without consent outweigh the risks:

·       the lack of privacy and control over health information causes bad outcomes: when people realize that they cannot control health records, millions refuse diagnosis and treatment for cancer, depression, and sexually-transmitted diseases

·       there is no need to choose between respecting patients’ rights to privacy and doing research—it’s a false choice, consent technologies can enable people to easily choose and give automatic consents for research projects they support, or be contacted case-by-case for permission

·       there was no public debate about whether every American’s electronic health information should be used for research without consent

·       current electronic systems do not allow patients to control any uses of their health data—-why continue to use such badly-designed systems?

·       there are no “dangers of over notification” with today’s systems—in fact, patients get no notice at all when personal data is used for research

Americans have not agreed to a healthcare system that turns them into electronic guinea pigs.

Why not build patient-centered systems so we can make important decisions about ourselves, instead of hospital administrators and researchers choosing for us?  “Nothing about me without me.”

Crunch Two Data Sets, Call Me in the Morning

See full article in Bloomberg Businessweek Article

As hospitals are acquiring more and more digital patient data, they are quickly turning to “Big Data” tech companies with expertise in data-mining, which “has already led to some measurable improvements in patient care” according to hospital administration. However, patients are rarely notified when their records are being used in this way because the data is exempt from federal privacy protection due to their necessity for “quality improvement”. “People do not like to have researchers of any stripe using their electronic health records”, says Deborah Peel, MD of Patient Privacy Rights. “As a matter of respect and autonomy and patient-centeredness, patients want to be asked. When they are asked, by and large, they support this. It’s the not-being-asked stuff that’s really bad”. A breakdown in patient-physician trust about data privacy can cause huge problems with patient care arising from patients refusing to share all necessary information with physicians as a means to avoid exposure.