PPR on article: What ‘Patient-Centered’ Should Mean…

It is extremely helpful that the nominee to head of one of the largest federal agencies, the Centers for Medicare and Medicaid (CMS), stated he believes medical records should belong to patients.

You will be intrigued by Don Berwick’s terrific and very personal article titled “What ‘Patient-Centered’ Should Mean: Confessions Of An Extremist, A seasoned clinician and expert fears the loss of his humanity if he should become a patient.” He is a highly respected physician and scholar. Key quotes:

  • “Medical records would belong to patients. Clinicians, rather than patients, would need to have permission to gain access to them.”
  • “My proposed definition of “patient-centered care” is this: The experience (to the extent the informed, individual patient desires it) of transparency, individualization, recognition, respect, dignity, and choice in all matters, without exception, related to one’s person, circumstances, and relationships in health care . . .”

BMA calls for roll-out of electronic patient records to be suspended

The BMA has written to the government calling for a suspension of the programme to upload summaries of patients’ medical records in England to a national database.

In December, the Department of Health announced that the roll-out of the Summary Care Record would be accelerated, and the BMA has serious concerns that the process is being carried out too quickly. Patients can opt out of having a record created, and the BMA believes they are receiving insufficient information about the choices they can make.

GPs have reported that the rushed implementation of the programme means they do not have time to support patients in making an informed choice, and that in some cases records are being created without even implied consent from patients.

How to reconcile Kaiser’s statements about who can access patient data

Two reports of how Kaiser Permanente approaches security left this blogger scratching her head last week as the reports might seem to contradict each other. And because the VA Watchdog had the same questions I have, I decided to follow-up.

On February 28, and as reported by Health Data Management, Eric Liederman, M.D, director of medical informatics at Kaiser Permanente’s Northern California division, described the security approach this way during the Physicians Symposium at the HIMSS 2010 Conference & Exhibition in Atlanta:

Patients are not being adequately informed about electronic patient records, says BMA

Patients don’t have enough information about electronic patient records and it is too hard for them to opt-out if they want to, the BMA said today (Monday 1 March 2010).

Following limited local piloting, patients’ summary care records1 are now going to be uploaded to a central database across England. Five Strategic Health Authorities recently announced they were speeding up their plans2. Anyone who does not want to have a Summary Care Record (SCR) has to opt out3 by informing their GP or by completing a form either downloaded from the internet or requested through an ‘0845’ national call centre.4

Ethics Debate Over Blood From Newborn Safety Tests

After those tiny blood spots are tested for a list of devastating diseases, some states are storing them for years. Scientists consider the leftover samples a treasure, both to improve newborn screening and to study bigger questions, like which environmental toxins can harm a fetus’ developing heart or which genes trigger childhood cancers.

But seldom are parents asked to consent to such research — most probably do not know it occurs — raising privacy concerns that are shaking up one of public health’s most successful programs. Texas is poised to throw away blood samples from more than 5 million babies to settle a lawsuit from parents angry at what they call secret DNA warehousing. A judge recently dismissed a similar lawsuit in Minnesota.

Health Care’s Digital Privacy Debate

As President Obama has learned over the last year, Americans tend to get angry when you try to fix the country’s dysfunctional health care system. But even as the national debate over universal coverage drags on, there’s another sticky issue ahead for health reform: digital privacy.

In a study released Monday by the privacy-focused Ponemon Institute, Americans registered a deep distrust of anyone in either the federal government or private industry who might store digital health records like those that the Obama administration has encouraged hospitals to create. Of the 868 Americans surveyed about their views on digitizing and storing health records, only 27% said they would trust a federal agency to store or access the data–the same percentage as those who would trust a technology firm like Google ( GOOG – news – people ), Microsoft ( MSFT – news – people ) or General Electric ( GE – news – people ).

Security and Hacking, Real Fears

See the WSJ Article: New Epidemic Fears: Hackers

Securing health records in small doctor’s offices and clinics is not easy: small offices can’t afford Fort-Knox style data protection measures, like hiring security experts to make sure hackers aren’t getting into their systems. Even if electronic health records software includes encryption and other security features doesn’t mean those features will be turned on and used.

• Now, many privacy advocates are concerned the administration’s effort could end up making health information less secure. “If there isn’t a concerted effort to acknowledge that the security risks are very real and very serious then we could end up doing it wrong,” says Avi Rubin, technical director of the Information Security Institute at Johns Hopkins University.

• “As more information is shared, it is subjected to the weak-link effect.”

• Mr. Osteen’s efforts to safeguard information won’t be useful if smaller providers he shares it with haven’t made the same kind of security investments.”

Genetic Privacy Debate hits Major League Baseball

The story highlights the use of DNA testing by ‘employers’–Major League Baseball franchises. Baseball tests to verify the ages and identities of players from Latin America, but the test samples can also be used to detect familial genetic dieseases such as ALS (which Lou Gehrig had).

• “DNA contains a host of information about risks for future diseases that prospective employers might be interested in discovering and considering,” said Kathy Hudson, the director of the Genetics and Public Policy Center and an associate professor at Johns Hopkins University. “The point of GINA was to remove the temptation and prohibit employers from asking or receiving genetic information.”

The big problem is that the Genetic Information Non-Discrimination Act (GINA) does not stop employers or insurers from receiving or using genetic information. It isn’t enforceable.

Baseball players are not the only ones whose DNA and genetic tests can be used against them–the same thing can happen to all of us.

According to GINA, employers and insurers can’t use genetic tests to discriminate against employees or enrollees in health plans, but there is no way to tell whether they do or not. Employers and insurers do not have to inform us if they have copies of our genetic or DNA records.

• Do you think an employer is going to tell you were passed over for a promotion based on your DNA?

GINA is toothless–it forbids bad behavior but there is no way to enforce it.

And Americans’ genetic privacy is not protected by HIPAA. HIPAA makes it impossible for any of us to prevent OUR sensitive health information from being used by millions of ‘covered entities’ and ‘business associates’ for purposes we would never agree with–including using genetic tests to discriminate againts us.

Face Book users control who sees the personal information they post on their walls, but Americans can’t control who sees their electronic health information. What’s wrong with this picture?

The rules for spending $19 Billion on health IT are being written now. Now is the time we must press to restore control over OUR personal health data.

Stay tuned–sign up for our alerts and we’ll tell you what you can do to save privacy.

On HealthDataRights.org and their Declaration

HealthDataRights.org supports only ACCESS to personal health data–which is a no-brainer and a right Americans have always had. The stimulus bill makes clear that we all have the right to copies of our electronic health records because some providers have make them so hard to get.

But HealthDataRights does NOT support the most critical right of all: the right to CONTROL who can access and use our personal health data in electronic systems. They even claim “privacy” stops data flow and will stop research–which is a lie. Informed consent and control over our own data ensures it’s there when we want it and ONLY for uses or research that we agree with.

HealthDataRights.org is a faux consumer rights organization, as revealed in their FAQs:

• “The organizers of HealthDataRights.org include doctors, researchers, software developers, writers, entrepreneurs, health economists, and many others who share a common goal of greater health data availability.” TO WHOM WILL THE ENTIRE NATION’S DATA BE AVAILABLE? TO THE DATA MINING AND RESEARCH INDUSTRIES THAT WANT OPEN ACCESS TO OUR DATA FOR USES WE HAVE NO CONTROL OVER.

• “Some of us have seen clearly how restrictions on health data and medical records can lead to great pain and suffering—needlessly, in most cases.” MILLIONS OF PATIENTS EVERY YEAR SEE CLEARLY HOW DANGEROUS HEALTHCARE IS WITHOUT PRIVACY AND DELAY OR REFUSE CARE, LEADING TO DEATHS FROM CANCER, PTSD, AND DEPRESSION—COSTING FAR MORE THAN IF TIMELY OR PREVENTIVE CARE WAS PRIVATE.

• “At the same time, we know that too often “privacy” is used as an inappropriate excuse to keep people from gaining access to their own health data and information, which they have every right under HIPAA and most state laws to view and access.” CLAIMING PRIVACY AS AN EXCUSE NOT TO GIVE ACCESS TO PERSONAL HEALTH DATA IS WRONG OF COURSE, BUT WORSE AND FAR MORE DAMAGING IS EXPOSING HEALTH DATA TO THEFT, SALE, AND MISUSE BY MILLIONS OF HEALTH-RELATED BUSINESSES AND ALL GOVERNMENT AGENCIES.

• “Does this Declaration suggest people should have exclusive rights to their data?

“No, we are not suggesting that, although this is a thorny issue. Doctors need accurate information about their patients and are required by law to maintain this information. Labs are required to hold onto their test results for up to seven years. There are also health care organizations that use their patients’ or members’ data to suggest improvements to the care delivered to them, usually with a blanket permission signed by the patient at the initial visit and later forgotten. This is not necessarily a bad thing and may be very beneficial for patients, even though permission is not sought for each particular instance of that use. In addition, aggregated and anonymized, population data obviously is key to learning what is working for whom, what is cost effective for whom, and what is the best way to treat any condition for whom. We are supportive of organizations that are endeavoring to improve public health by learning from population data. An “exclusive right” could be read as contradictory to that. What we do affirm, strongly, is that people do have a right to their own data.”

PATIENTS SHOULD HAVE EXCLUSIVE RIGHTS TO THEIR HEALTH DATA—-EVEN NEWT GINGRICH SAYS AMERICANS SHOULD “OWN” THEIR PERSONAL HEALTH DATA.

THIS IS WHERE THEY STATE THAT THE RIGHT TO PRIVACY—THE BASIS OF THE HIPPOCRATIC OATH AND OUR STRONG EXISTING LEGAL RIGHTS TO PRIVACY—WOULD “BE CONTRADICTORY” TO PUBLIC HEALTH RESEARCH. PUBLIC HEALTH DATA IS COLLECTED BECAUSE OF LAWS THAT WERE DEBATED BEFORE BEING PASSED. BUT FUTURE “POPULATION HEALTH” RESEARCH USING ELECTRONIC HEALTH SYSTEMS WILL TAKE PLACE WITHOUT CONSENT BECAUSE EVERY ELECTRONIC HEALTH RECORD WILL BE “WIRED” FOR DATA MINING WITHOUT PATIENT KNOWLEDGE OR CONSENT. RESEARCH WITHOUT CONSENT VIOLATES MEDICAL ETHICS AND INTERNATIONAL TREATIES.

• Who is funding HealthDataRights.org?

HealthDataRights.org is entirely volunteer and has no funding. Any direct costs are being paid out of pocket by the individuals involved. THE INDIVIDUALS’ NAMES ARE NOT LISTED.

You can see the story on HealthDataRights.org debut at:http://www.localhost:8888/pprold/site/News2?page=NewsArticle&id=9475&news_iv_ctrl=-1

But privacy is ALREADY gone!

Refer to Wall Street Journal article: Is Government Health Care Constitutional?

The authors fear that Americans’ health privacy rights will be eliminated by health reform if a proposed “public plan” evolves into “single payer”.

They are too late, there is no privacy (the right to control personal information) in the US electronic health system —EXCEPT for the strong new rights Congress added to the stimulus bill: the ban on sales of PHI, the right to segment sensitive records, and the right to limit disclosure of PHI to health plans for payment or HCO if treatment is paid for out-of-pocket.

Our strong existing ethical and legal privacy rights (a powerful national consensus arrived at over 200+ years) are being totally ignored by federal and state government and industry.

The authors clearly don’t know that we have no health privacy today or that privacy advocates in the bipartisan Coalition for Patient Privacy (representing 10 million Americans) work to restore those rights.

In 2002, amendments to the HIPAA regulations granted new rights to corporations and government to use ALL health data without informed consent for purposes no one would ever agree to AND eliminated Americans’ rights to give consent before our data is used. See:HIPAA_Intent_Vs_Reality . In 1999, the HIPAA statute granted law enforcement unfettered access to all electronic health records without informed consent or any judicial process.

Both Democratic and Republican Administrations and Congress have contributed to eliminating patients’ rights to control personal health information. The ONC-Coordinated Federal Health IT Strategic Plan: 2008-2012, requires all EHRs to be “wired” for data mining and requires every citizen to have an EHR by 2014.
See:HITStrategicPlan08.pdf

The Federal Strategic Plan grants “back door” access to the nation’s electronic records to government agencies; to the for-profit research industry for P4P, QI, population health, genetic research (personalized medicine), etc; and to the insurance industry to detect fraud (this is one of the most offensive and discriminatory measures planned–the last people patients want to have MORE access to sensitive health records are insurers and employers).

Key Quotes:

• The Supreme Court created the right to privacy in the 1960s

• the justices posited a constitutionally mandated zone of personal privacy that must remain free of government regulation, except in the most exceptional circumstances.

• Taking key decisions away from patient and physician, or otherwise limiting their available choices, will render any new system constitutionally vulnerable.

• if over time, as many critics fear, a “public option” health insurance plan turns into what amounts to a single-payer system, the constitutional issues regarding treatment and reimbursement decisions will be manifold. The same will be true of a quasi-private system where the government claims a large role in defining acceptable health-insurance coverage and treatments. There will be all sorts of “undue burdens” on the rights of patients to receive the care they may want. Then the litigation will begin.

• In crafting the law, however, its White House and congressional sponsors must keep privacy — that near absolute right to personal autonomy they have so often praised and promoted — squarely before them. The only thing that is certain today is that the courts, and not Congress, will have the last word.

The authors tilt at the wrong windmill –not realizing they are too late: the privacy for health data in electronic systems is already GONE. We hope they will join us and work to RESTORE Americans’ longstanding ethical and legal rights to health privacy–regardless of a “public plan” or whether it turns into “single payer”.