Putting Health IT on the Path to Success

“The promise of health information technology (HIT) is comprehensive electronic patient records when and where needed, leading to improved quality of care at reduced cost. However, physician experience and other available evidence suggest that this promise is largely unfulfilled.

Comprehensive records require more than having every physician and hospital use an electronic health record (EHR) system. There must also be an effective, efficient, and trustworthy mechanism for health information exchange (HIE) to aggregate each patient’s scattered records into a complete whole when needed. This mechanism must also be accurate and reliable, protect patient privacy, and ensure that medical record access is transparent and accountable to patients.”

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Privacy Piracy Interview with PPR Founder

PRIVACY PIRACY HOST, MARI FRANK, ESQ. INTERVIEWS
DEBORAH PEEL, MARCH 11TH, 2013

On Monday, March 11th, 2013 Deborah C. Peel, MD, founder & chair of Patient Privacy Rights, was interviewed on Privacy Piracy with Mari Frank.

Among the topics of discussion were:

  1. The current state of Health Privacy
  2. How can individuals help to save and strengthen health privacy rights?
  3. What is the focus of the third International Summit on the Future of Health Privacy?

Should the U.S. Adopt European-Style Data-Privacy Protections?

View the full article at Should the U.S. Adopt European-Style Data-Privacy Protections?

This urgent issue will be debated at the 3rd International Summit on the Future of Health Privacy in Washington, DC on June 5-6, 2013 at Georgetown Law Center.

The opening keynote will be Peter Hustinx, the EU Data Protection Supervisor. He will speak on “A health check on data privacy?”

Register to attend at www.healthprivacysummit.org . Later we will post a link to watch via live-streaming video.

HIPAA Omnibus: Gaps In Privacy? — Interview with Deborah C. Peel, MD

Although the HIPAA Omnibus Rule is a step in the right direction for protecting health information, the regulation still leaves large privacy gaps, says patient advocate Deborah Peel, M.D.

HIPAA Omnibus finally affirmed that states can pass laws that are tougher than HIPAA, and that’s really good news because HIPAA is so full of flaws and defects that we are concerned that what is being built and funded will not be trusted by the pubic,” Peel says in an interview with HealthcareInfoSecurity during the 2013 HIMSS Conference.

Listen to this interview and read the full article here.

Re: Car X.O. cares about health

In response to the Healthcare IT News article: Car X.O. cares about health

This sounds like a bad joke: your new Ford car’s “SYNC” technology monitors your stress, blood sugars, blood pressure, gives you allergy alerts while tracking your behavior behind the wheel and how distracted you are. But it’s no joke, it’s in 5 million cars.
According to Ford:

  • “There’s a strong business case to explore health options”
  • “consumers are on the road more than ever”
  • “Drivers could manage their health while in motion, said Strumolo, or more likely while at a red light.”
  • “Ford has forged partnerships with Healthrageous Microsoft, Medtronic, IMS, WellDoc and others.”

What business case? How does tracking your health give Ford and health-monitoring technologies a way to make money?

Answer: selling your health data, most likely to auto insurers, health insurers, life insurers, and employers like trucking companies and those who employ drivers.

It would be great for us to have this kind of information about our bodies and minds so we can act to improve our health or share it with our doctors: instead, it’s sold to discriminate against us.

Surveillance and collection of the nation’s health data is a growth industry worth hundreds of billions in annual revenue to corporate America—-but what value do we get from that?

But state lawmakers can fix the broken HIPAA Privacy Rule and require meaningful, informed consent before EVERY use or collection of our health information—-we don’t have to wait for Congress. We can fix this in our home states.

Most U.S. Doctors Believe Patients Should Update Electronic Health Record, but Not Have Full Access to It, According to Accenture Eight-Country Surve

To view the full article, please visit Most U.S. Doctors Believe Patients Should Update Electronic Health Record, but Not Have Full Access to It, According to Accenture Eight-Country Survey.

According to a Harris Poll,  70% of doctors don’t “believe” patients should be able to get FULL copies of their electronic health records.

But patients have always had the right to copies of their paper medical records—it was just a hassle to get them.  HIPAA,  HITECH, and the Omnibus Privacy Rule all affirmed patients have the right to download copies of their electronic health information.

Do only 30% of doctors understand patients’ rights under the law?  MD Anderson Cancer Center has given patients FULL downloads of their electronic health records for years.

Dr. Peel at Authors’ Roundtable at HIMSS 2013

Dr. Deborah Peel, PPR Founder & Chair, will join her co-authors to talk about pressing privacy issues raised in HIMSS’s just released book, Information Privacy in the Evolving Healthcare Environment. As a co-author, Dr. Peel’s contributing chapter discusses patients’ rights to privacy and consent and outlines the auditable criteria of PPR’s Trust Framework, which includes 15 clear principles to ensure meaningful consent within all electronic systems.

Purchase the book here.

Restoring patient control over PHI will be a key topic discussed, with additional focus on the technologies and laws needed to address the gaps and flaws in the Omnibus Privacy Rule.

Date: Tuesday, March 5, 2013
Time: 11:00 AM CT
Where:
HIMSS 2013 Annual Conference and Exhibition
Room 213
New Orleans Ernest N. Morial Convention Center
900 Convention Center Boulevard
New Orleans, Louisiana

An advocate for patients’ rights to health privacy since 2004, when she formed PPR, Dr. Peel has led the charge for more stringent data privacy and security protections, as well as tough new enforcement and penalties for violations that were included in the January 2013 release of the Omnibus Privacy Rule.

Data Protection Laws, an Ocean Apart

American citizens are like just like EU citizens: they want the same strong rights to control personal information online, especially health information.

See the letter Patient Privacy Rights and other NGOs signed supporting the EU’s tough requirements for data protection.  The letter urges the US government policy makers to support the same tough data protections for US citizens, also embodied in the protections President Obama laid out in the “Consumer Privacy Bill of Rights”.

Unfortunately, the “Consumer Privacy Bill of Rights” exempts all health data, leaving the flawed HIPAA Privacy Rule that eliminates our control over personal health data in effect. The 563 page Omnibus Privacy Rules adds strong data security protections and stronger enforcement of violations for some health data holders and users, but not all. But it does not restore patients’ rights to consent before personal health information is accessed or used, even though the right to control health information has been the law of land for centuries and is the key ethic in the Hippocratic Oath (requires doctors to keep information private and not share it without consent).

US citizens will not trust their physicians or electronic health systems unless they control who can see and use their records, from diagnoses to DNA to prescriptions.

Privacy and Health Care – Blog referencing PPR’s “The Case for Informed Consent”

The blog Emergent Chaos wrote an article urging for privacy in the mental health field as a means of minimizing the stigma associated with diagnosis.

Some key statistics pointed out in this post:

“First, between 13 and 17% of Americans admit in surveys to hiding health information in the current system. That’s probably a lower-bound, as we can expect some of the privacy sensitive population will decline to be surveyed, and some fraction of those who are surveyed may hide their information hiding. (It’s information-hiding all the way down.)

Secondly, 1 in 8 Americans (12.5%) put their health at risk because of privacy concerns, including avoiding their regular doctor, asking their doctor to record a different diagnosis, or avoiding tests.”

Can computers predict medical problems? VA thinks maybe.

To view the full article written by Bob Brewin for Nextgov, please visit Can computers predict medical problems? VA thinks maybe.

“The Veterans Health Administration plans to test how advanced clinical reasoning and prediction systems can use massive amounts of archived patient data to help improve care, efficiency and health outcomes.”

Two veterans commented on the story below:

  • -“total invasion of privacy, I have a big problem with a “vendor” going through my records let alone the VA. the VA doesnt exactly have a good track record of protecting information”
  • -“veterans are NO LONGER guinea pigs without express PRIOR written consent, that is MEDICAL DATA covered by HIPAA, and is expressly forbidden to be managed in an open fashion and is NOT for sale.”

Like 99% of Americans, these vets oppose research use of their health information without consent:

US health IT systems and the VA could offer electronic consent to participate in studies:

  • -Electronic consent tools can enable each patient to set his or her own broad rules to allow research use of their health data.
  • -Vets could be ‘pinged’ for consent for EACH study, set broad rules to allow use of data for all studies, or set their rules for something in between (such as: I will agree to all research use of my data on traumatic brain injury and PTSD, but contact me for consent for all other studies).

Unfortunately the new Omnibus Privacy Rule grants open access to all 300 million citizens’ sensitive health information without consent for any ‘research’ or ‘public health’ use.
The broad ‘research loophole’ in HIPAA and the new Omnibus Privacy Rule permits industry (corporations including insurers, employers, drug companies, marketers, pharmacies, labs, and others) to use and sell our personal data for “research” that we would never agree with. ‘Research’ is defined so broadly that:

  • -Blue Health Intelligence (a subsidiary of Blue Cross Blue Shield) does ‘research’. It uses and sells enrollees’ health data without consent.
  • -IMS Health data mines and sells the nation’s prescription records. Claiming to do ‘research’ allows IMS Health to use and sell Americans’ prescription records without consent.
  • -Many electronic health record companies (Cerner, GE Centricity, Greenway, Athena Health, and Practice Fusion) are also ‘research companies’ and sell health data.
  • -The ‘research’ industry sells data that is supposedly ‘de-identified’, but health data is easy to re-identify (See paper by Narayanan and Shmatikov:
  • http://www.cs.utexas.edu/~shmat/shmat_cacm10.pdf ). And there is no way to know when ‘de-identified’ data is re-identified. Texas law bans re-identification’ of health data, but the system depends on whistleblowers to report violations.
  • -Most ‘researchers’ are not physicians, scholars, and PhDs at academic centers, as the public assumes.

Why wouldn’t every corporation that touches health data declare itself a ‘research institution’ so it can collect, use, and sell Americans’ health data? Personal health information is THE MOST valuable data of all, but we have no way to control which corporations collect and use health data.
How large a part of the surveillance economy is personal health data?