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A Dream of Reason

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The dream of reason did not take power into account…Modern medicine is one of those extraordinary works of reason…But medicine is also a world of power.

-Paul Starr, The Social Transformation of American Medicine, 1984

Today’s unveiling of a Declaration of Health Data Rights is an important action, long overdue, that represents a collaborative effort by a group of health care professionals – activists, entrepreneurs, technologists and clinicians – all colleagues we hold in high esteem.

The Declaration’s several points arise from a single, simple premise: that patients own their own data, and that that ownership cannot be pre-empted by a professional or an institution. And there lies its power, especially in the context of early 21st Century health care. It is a transformative ideal that currently is not the norm. But we join our colleagues in declaring that it should be.

It is fair to note that this effort – making sure that all of us have immediate access to personal health information in easy-to-use (i.e., electronic or “computable”) format – is NOT the most important thing we need to achieve in health care right now. We all know that the system is wildly out of balance, with costs so excessive that even the insured mainstream of Americans risk financial ruin with a major health event, and quality that varies from superb to atrocious. Restoring a semblance of stability and sustainability to America’s health system will require many measures that may not include an individual’s right to control his/her own health information.

But it is an appropriate, critically necessary seed, nonetheless. Information withheld from patients, purchasers and professionals, wittingly or unwittingly, is the deepest root of America’s health care crisis.  Too often it is an act of power, enabling – and we use this word in the clinical sense – actions without accountability, and trumping the checks and balances that laws and markets strive for in progressive societies. There are many other roots to our current dilemma, of course, but nothing is as pernicious or corrosive as the lack of information transparency. It has been the practice in American health care for decades, with ramifications so grave that, by itself, it has placed the nation’s future in peril.

And so the right place to begin is with a straightforward statement that health information belongs first and foremost to patients. We hope that this seed will take root, that doctors around the country will erect a small poster in their waiting rooms saying “We support the Declaration of Health Data Rights.”And we also hope this event will spur a new sensibility about who owns information, about accountability, so that pricing and quality information on doctors, hospitals, health plans, drugs, devices, diagnostic procedures and treatments become freely available to health care patients and purchasers, so that absolute power is trumped and so Americans can have health care that is trustworthy, excellent and affordable, no matter where it is received.

Brian Klepper PhD is a health care market analyst and advisor to the industry. David C. Kibbe MD MBA is a Family Physician and Senior Advisor to the American Academy of Family Physicians who consults on health care professional and consumer technologies.

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MelindanotthereMargalit Gur-ArieJames Mhyre, MDAlfred Jordan Recent comment authors
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notthere
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notthere

May be we need to look after democracy here before we tell other countries how to live. I’ve had enough of the posturing, lying, propaganda and hypocrisy. It’s time to hold feet to the fire. We’re not going to get the obvious, sensible and real solution to US healthcare which is single payer, (No, that doesn’t necessarily exclude private insurance.) combining Medicare, Medicaid, SCHIP, Federal, VA and the military, dumping all the unnecessarily different bureaucracies, and building a realtime medical IT system. The X-factor insurance costs. If any of our representatives and senators want to vote against a federally funded… Read more »

Margalit Gur-Arie
Guest

Thanks, Dr. Mhyre.
I’m looking forward to that white paper.

James Mhyre, MD
Guest

Margalit Gur-Arie Each professional author such as a lab keeps their primary legal records. For the federated or portal models of PHRs the individual has limited editing capability or rights. However, for the data bank PHR model, copies of the individual records are collated into one data set under the ownership and control of the individual. The individual might choose to alter data in their copy to correct it, unwittingly change its meaning, or deliberately falsify it. Subsequent users of this data might assume it is still attested by the original authors as accurate without crosschecking with primary sources. The… Read more »

Margalit Gur-Arie
Guest

Dr. Mhyre, I have two questions regarding the hiding of data in the PHR framework: 1) How can a patient hide data from the PHR supplier itself? For example, if the PHR is supplied by a third party, and the patient authorizes labs to be sent to the PHR, and the lab result is HIV positive, the PHR supplier is already in possession of that information. Standalone PHR suppliers are usually not bound by HIPAA privacy laws. So wouldn’t it be too late for the patient to just go in there and delete or block access to that result? 2)Regarding… Read more »

James Mhyre, MD
Guest

Brian, PHR advocates have assumed these rights in our future vision. More interesting is what right do individual’s have to alter their copies of professionally sourced records? The decloration of rights state that the individual owns their data and they may release it as they see fit. The HL7 PHR-FM (functional model) workgroup is working on a white paper recommending standards for what should be allowed and the consequences. Appending or making transparent corrections is not the issue. Hiding data is a standard feature of PHRs and privacy rights. Individuals can hide data such as HIV status or release a… Read more »

Alfred Jordan
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Alfred Jordan

It all depends upon the use of data and whether it is depersonalized that could make the difference between better medical outcomes or remain where we are today mired in control by third parties over our health care. If however legitimate uses of data and permissions to use medical to improve the quality of care is denied then we are no further ahead than where we are now which is the use of our data as weapons against us or to unjustly enrich those who steal our identities.

Melinda
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Melinda

Even depersonalized information, if compiled, becomes a commodity of incalculable value to a broad range of corporations who would pay gladly to obtain such data. Becoming the nexus for the flow and control of this kind of database, if not made available to those from whom it is derived, continues the potential for abuse through the limitation of choices in treatment. Because of this potential for abuse only the most ethical could be entrusted to reliably depersonalize such data. Imagine the potential for abuse! What would matter most would be for individuals to have access to information regarding medical outcomes… Read more »

Dr.Rick Lippin
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Brian
Thanks for the realistic Paul Starr quote you began with.
But the more we buy into that paradigm of power the insitution of Medicine remains a sham.
Hopeless idealist,
Dr. Rick Lippin
Southampton,Pa
http://medicalcrises.blogspot.com

propensity
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propensity

First, the data must be accurate. Why did the computerized medical records at the Va Hospital in Philadelphia keep the outcomes from being known? Garbage in garbage out?
It would behoove these do gooders to focus their efforts on a bill of rights protecting patients from the ills of flawed data and dangerous computers. Let’s get our priorities in order.