National experts to meet at HIMSS to promote health record banks

See the full article at: http://www.nhinwatch.com/perspective/national-experts-meet-himss-promote-health-record-banks

Experts are planning to meet at HIMSS to discuss “strategies to promote and accelerate development and adoption of HRBs – community-based personally controlled repositories of electronic health records.”

Some key points:

  • -”HRBs can provide effective and efficient health information infrastructure (HII) in communities by simultaneously addressing the interdependent requirements of privacy, stakeholder participation and financial sustainability.”
  • -”HRB allows patients to readily and conveniently manage their access permissions in one place. In addition to being an effective approach to privacy, patient control also ensures that stakeholders make information available.”

The article goes on to list the cost and efficiency revenue advantages of HRBs as well as the privacy implications.

Re: Big Changes Coming in EU Privacy Law

Regarding the article in the Genomics Law Report: Big Changes Coming in EU Privacy Law

The new EU standards for data privacy apply to health data and require the level of personal control over health data and informed consent that Americans expect from electronic health systems, but don’t have. US companies doing business in the EU will have to comply with these tough new privacy protections in a year or face penalties. If companies can build privacy-protective systems there, why not here?

Quote:

  • Companies doing business in the EU must prove “every subject has given consent for the processing of their data for specified purposes. Consent is defined as “any freely given specific, informed and explicit [emphasis added] indication of will,” and can be withdrawn at any time. The subject will also have a controversial “right to be forgotten and to erasure.” This means that when the subject withdraws consent or “the data are no longer necessary” for the purposes for which they were collected, the company must render the data inaccessible, including on the Internet.”

Americans feel the exact same way the European public feels; they too want ethics-based systems that comply with longstanding rights to health privacy.

Since US companies will have to comply with strong patient privacy rights in the EU, they could obviously do the same in the US. Unless the US builds in the same strong patient protections, research comparing electronic health records in the US and EU will be impossible.

The Administration should use the EU example to move forward and require US electronic systems and data exchanges be built to comply with Americans’ longstanding rights to control the use of personal health information.

Re: Health Industry Under-Prepared to Protect Patient Privacy, Says PwC Report

In response to the Security Week article: Health Industry Under-Prepared to Protect Patient Privacy, Says PwC Report

The US is facing an unprecedented privacy crisis. The healthcare industry is extremely negligent about protecting data security and privacy (patient consent). At the same time 3/4 of the healthcare industry further risks patient privacy by selling or intending to sell data for secondary uses. Data theft and sales are driven in large part because, “Digitized health data is becoming one of the most highly valued assets in the health industry.”

  • Sixty-one percent of pharmaceutical and life sciences companies, 40 percent of health insurers, and 38 percent or providers currently share information externally. Of those organizations that share data externally, only two in five pharmaceutical and life sciences companies (43 percent) and one in four insurers (25 percent) and providers (26 percent) have identified contractual, policy or legal restrictions on how the data can be used.
  • Most corporations using patient data lack an effective consent process, “Only 17 percent of providers, 19 percent of payers and 22 percent of pharmaceutical/life sciences companies have a process in place to manage patients’ consent for how their information can be used.”

It’s a double whammy—not only is sensitive health information at high risk of misuse, sale, and breach INSIDE healthcare organizations, it’s also sold to OUTSIDE organizations that lack effective security and privacy measures.

  • “Nearly three quarters (74 percent) of healthcare organizations surveyed said they already do or intend to seek secondary uses for health data; however, less than half have addressed or are in the process of addressing related privacy and security issues.”

PriceWaterhouseCoopers surveyed 600 executives from US hospitals and physician organizations, health insurers, and pharmaceutical and life sciences companies. Data security and privacy practices were abysmal despite new enforcement efforts by the Administration, and despite hundreds of major data breaches compromising the privacy of millions of Americans.

Why aren’t Congress and the public outraged that the privacy and security of health information is so bad? If the banking industry operated like this there would be MAJOR oversight hearings and new laws.

The idea that today’s electronic healthcare systems and data exchanges safeguard health data is simply wrong. Clearly federal and state oversight and penalties for failure to protect the most sensitive personal data on earth need to be increased.

Re: 2012: Time for Action on Health Privacy

Things in Washington DC must really be bad if Deven McGraw, Chair of the Privacy and Security Tiger Team and member of the national Health IT Policy Committee, is speaking out so clearly about the lack of privacy protections in federal policy. She states in the article “2012: Time for Action on Health Privacy” that it’s time for HHS/ONC to change their “pattern” of “too much talk and not enough action” to protect privacy. Is there a privacy crisis? PPR thinks it’s critical to build privacy and patient control over data in up front. Now is the time!

See full article

“Consumers and patients support the electronic sharing of health information and are eager to experience the benefits of widespread adoption and use of electronic health records. Yet a substantial majority continue to express significant concerns regarding the impact of e-health on the privacy and security of their health information. According to a recent survey by the Markle Foundation, the privacy of health information is a significant concern for the American public and doctors who serve them.

Building and maintaining public trust in health IT and health information sharing will be critical to leveraging their benefits to improve individual and population health. The rhetoric from the Office of the National Coordinator for Health IT and HHS has been consistently strong on the importance of respecting the confidentiality of health information; however, with a few exceptions, the pattern has been too much talk and not enough action.”

Physician’s computers were stolen

See the full story from MySanAntonio.com: “Physician’s computers were stolen

“Five computers containing medical and personal information of more than 3,000 patients were stolen from a Stone Oak physician’s office in October.

Dr. Sudhir Gogu of the Stone Oak Urgent Care & Family Practice said the computers were stolen after an office door had been pried open sometime during the weekend of Oct. 22-23, according to the police report.

A San Antonio Police Department spokesman said in an email Wednesday that the computers have not been recovered and there have been no arrests…

…Dr. Deborah Peel, founder and chairman of Patient Privacy Rights, an organization focused on putting people in control of their electronic health information, called medical identity theft a dangerous crime.

“It typically costs the average victim at least $20,000, and health plans typically increase your premiums … or may even cancel your coverage,” Peel said.

Peel criticized the health industry for failing to taken data protection seriously.

“It’s estimated that 80 percent of hospitals don’t encrypt data,” she said. “Can you imagine if your banks didn’t encrypt and keep your financial information secure? We wouldn’t even let them be banks.””

Re: David Cameron ready to put chunks of NHS up for sale, says Labour

The British Prime Minister proposes opening up and selling the health information of British citizens, ie copying the US model of data sales because he sees it’s worth tens-hundreds of billions in annual revenue to those in the US selling data. For at least the past decade, US industry has been violating Americans’ expectations and strong rights to health privacy by selling and using sensitive patient health information without consent, and without public awareness, much less, debate.

See more here: David Cameron ready to put chunks of NHS up for sale, says Labour

Key quotes:

  • Prime Minister “[Cameron] sees no limit on the involvement of the private sector and says he wants it to be a ‘fantastic business’. In his desperation to develop a credible industrial strategy, he seems willing to put large chunks of our NHS up for sale.”
  • Roger Gross, from the pressure group Patient Concern, said that allowing private firms access to NHS data would mean “the death of patient confidentiality”.
  • “We understand GP surgeries will have the right to refuse to release their patients’ records, but whether patients will ever be told what is happening, let alone have the choice to protect their privacy, is still unclear,” Gross said.

Changes to EU Data Protection Directive Will Likely Impact U.S.-Based Companies

See full article at Loeb & Loeb, LLP Privacy Law Alert: Changes to EU Data Protection Directive Will Likely Impact U.S.-Based Companies

“Planned changes to the European Union’s Data Protection Directive (EU Directive), some of which are directed at non-EU companies, may significantly impact how U.S.-based entities that interact with EU consumers can collect, store and use consumer data.

The revised EU Directive will give consumers more control over their personal data, including requiring explicit user consent before companies can use data and giving consumers the right to delete data, especially data they posted themselves, otherwise known as the “right to be forgotten.”  The proposed changes also will likely include increased transparency for data processing – providing greater information about when and how data is collected, stored and used, and making it easier for consumers to indicate their privacy preferences.”

HIStalk Interviews Deborah Peel MD, Founder, Patient Privacy Rights

Give me some brief background about yourself and about Patient Privacy Rights.

I never expected to be leading this organization or ever even thought about that. In my younger days, I practiced full time as a psychiatrist and Freudian analyst for a very long time, until it became clear that things were happening in DC that would make effective mental healthcare impossible. Namely, that there were lots of different ideas being floated; for example, the Clinton healthcare initiative. There was a part of it that was going to require everyone’s data from every physician encounter be recorded in federal database.

Fast-forward to the HIPAA privacy rule. That’s what really convinced me of the need for a voice for consumers, because there really wasn’t any. What I’m talking about there is, of course, the change in 2002 that happened under everyone’s radar except for – and this is the is the laugh line – when the 3,000 Freudian psychoanalysts in the nation noticed that consent was eliminated.

In 2004, I started Patient Privacy Rights because there was no effective representation for the expectations and rights that the majority of Americans have for how the healthcare system is going to work. Namely, that people don’t get to see their information without consent. Since founding PPR in 2004, we’ve still been the national leading watchdog on the issues of patient control over information and even internationally. Our power has come because when we came to DC, the other people that were working on privacy, human rights, and civil rights recognized that because of my unique position as a physician and deep understanding of how data flows, that I knew what I was talking about.

We very quickly got a pretty amazing bipartisan coalition of over 50 organizations. That enabled us to put these issues and problems on the map.

We had some incredible successes in HITECH. Virtually all of the new consumer protections came from our group, including the ban on the sale of PHI, the accounting of disclosures, segmentation, the new requirement that if you pay out of pocket for treatment you should be able to block the flow of that data to health plans and health insurers. We were the ones that worked with Congressman Ed Markey on getting encryption, required stronger security protections, and worked with Senator Snow to get meaningful breach notice into the rules.

All of this work lead to the first-ever summit on the future of health privacy this past summer in DC. The videos and the entire meeting can be seen or streamed online at www.healthprivacysummit.org.

If somebody said you had to choose between accepting healthcare IT as it is today or going back to purely paper-based systems, which would you choose?

We’ve never been in favor of going back to paper…

Stanford medical records posted on public website, now removed

Below is part of the story published by MercuryNews.com, quoting Dr. Deborah Peel, founder of Patient Privacy Rights.

“The electronic medical records of 20,000 Stanford Hospital emergency room patients, including names and diagnostic codes, were posted on a commercial website, the hospital disclosed Thursday.

Personal information about patients seen between March 1 and Aug. 31, 2009, has been removed from the website and an investigation is under way, according to Stanford Hospital spokesman Gary Migdol.

But the startling breach — caused by a vendor’s subcontractor, who has assumed responsibility — raises questions about the privacy of medical information as it passes through many hands.

In one instance, it revealed a psychiatric diagnosis of a Santa Clara patient.

The released information also included medical record numbers, hospital account numbers, billing charges and emergency room admission and discharge dates. Credit card and Social Security numbers were not included…

…Americans expect doctors and hospitals to use their records only with consent, said Dr. Deborah C. Peel, founder of the watchdog group Patient Privacy Rights, “not to give them to legions of contractors and strangers. Existing regulations are just not strong enough to protect Americans’ sensitive health information. Today’s electronic health systems are not safe or trustworthy.”"

Patient Data Posted Online in Major Breach of Privacy

This New York Times article by Kevin Sack outlines the key findings by experts at the Health Privacy Sumit: There are SERIOUS flaws in electronic health records when it comes to privacy, and these need to be addressed NOW.

“A medical privacy breach led to the public posting on a commercial Web site of data for 20,000 emergency room patients at Stanford Hospital in Palo Alto, Calif., including names and diagnosis codes, the hospital has confirmed. The information stayed online for nearly a year.

Since discovering the breach last month, the hospital has been investigating how a detailed spreadsheet made its way from one of its vendors, a billing contractor identified as Multi-Specialty Collection Services, to a Web site called Student of Fortune, which allows students to solicit paid assistance with their schoolwork.

Gary Migdol, a spokesman for Stanford Hospital and Clinics, said the spreadsheet first appeared on the site on Sept. 9, 2010, as an attachment to a question about how to convert the data into a bar graph.

Although medical security breaches are not uncommon, the Stanford breach was notable for the length of time that the data remained publicly available without detection.

Even as government regulators strengthen oversight by requiring public reporting of breaches and imposing heavy fines, experts on medical security said the Stanford breach spotlighted the persistent vulnerability posed by legions of outside contractors that gain access to private data.”