A Dream of Reason


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.

9 replies »

  1. 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 so they could better decide for themselves what treatments to choose. The information should be open, transparent, and never monetized.

  2. 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 public option, how about they give up their federal healthcare. Give them an extra $12,700 a year or so (the average family cover 2008), no tax break, and let them find their own.
    And with ethics oversight to make sure they don’t get deals or care other people can’t.
    Let’s see if they like the insurance company control over their doctor’s choices and their choice of doctors. Let’s see what they call rationing. See how they like having to employ someone to fight their bills for them — god knows they are too incompetent to do it themselves. Let’s see what they think about nationalised health, socalization, and socialized medicine then.
    Below’s what I already sent my senator and rep (Klobuchar/Ellison) with some modification for them. We need a whole load of people to put these shits in a position of shame. We need this to spread exponentially. I’m going to spend the next few hours working the blogs and internet talking about healthcare, and hit all the Senators and as many reps as possible (though most won’t accept non-constituents).
    Help me, please. Hit all blogs, reps, sens, etc.
    I recommend putting this somewhat in your own words.
    Representative/Senator ———,
    I write to you concerning healthcare.
    I understand the inertia impeding the attempt to make healthcare cheaper, more effective and efficient, far less complicated, and universal. Single payer, which would not necessarily mean no private insurance, is the way to go. Adding a publically (federally) funded option is a key if small, and complicating, step on this route.
    In order to avoid any perceived conflict or hypocrisy, I recommend that any senators or representatives voting against a public option renounce their federal healthcare coverage and receive an additional $12,700 per annum (or equivalent, as this was the average health insurance family coverage premium in 2008), no tax breaks (like every other private insuree), and ethics oversight to prevent insurance company favoritism in cost, coverage or service, or federal help in fighting the bills or for care.
    Let’s see who is against a public option then.
    I thank you for your service.
    My name
    One of the Republican “talking points” is to tell anyone that is rich and says that they are willing to pay higher taxes to “Go ahead; pay more taxes. Send a check to the IRS.” Let’s all start hitting these people.
    The young may not think this matters but I have been in the States almost 30 years and healthcare has gone from 8 to 17% GDP of a much bigger GDP per capita. 30 years from now?
    The CBO itself says it is not mostly about the baby boomers but rising health costs.
    Please take time to put this out. Can we make this national?

  3. 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 individual could make verification difficult by insisting on privacy with the key primary sources. Pure privacy and freedom advocates, particularly some Europeans, argue we should encourage adoption of PHRs by granting the owner complete control over their data. Most American physicians and medical record experts would argue that if we change the data, the attestation should change as well and the PHR system should somehow flag or alert the user that a change has been made. The PHR is not a legal record. However, PHR data used in a professional record and attested to by signature becomes a legal record. All of the legal liability permutations have not been enumerated but it is obvious that the legal entropy of this system is not at steady state!

  4. 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 deletions or alterations, what are the legal issues, if any, that may come about from relying on a PHR that allows alterations and deletions, particularly ones that are not flagged?

  5. 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 partial record. Can they alter professionally sourced data such as changing a positive HIV to a negative on a lab report or reword their copy of a physician’s consult note? How should attestation work? Should the PHR system flag the data as being altered or incomplete or should the individual have the right to change their copy of their record any way they wish and reader beware? We physicians can live with these choices as long as we all understand the rules.
    James Mhyre, MD
    HL7 PHR-FM workgroup member

  6. 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.

  7. 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.