Transferring Data Directly to Patients

In an era when technology allows personal health information to be more easily stored, updated, accessed and exchanged, the following rights should be self-evident and inalienable. We the people:

• Have the right to our own health data

• Have the right to know the source of each health data element

• Have the right to take possession of a complete copy of our individual health data, without delay, at minimal or no cost; If data exist in computable form, they must be made available in that form

• Have the right to share our health data with others as we see fit
These principles express basic human rights as well as essential elements of health care that is participatory, appropriate and in the interests of each patient. No law or policy should abridge these rights.


Declaration of Health Data Rights, June 22. 2009

There is a school of thought that has as its main theme,” Give all patients their data. They have paid for it, they deserve to have it, and, given the wide availability of Internet information, they can interpret it. In this age of unlimited Internet information, they can look up what it means.”

A subtheme is;” To make the health system transparent and accountable, all we need to do is strip away the secrecy and the mystique that physicians have created that they are high priests who alone can plumb and decipher the mysteries and complexities of modern medicine.”

Here is the case for A Declaration of Health Data Rights, as eloquently presented by by Brian Klepper and David Kibbe in the June 22, The Health Care Blog,

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.

I personally think Klepper and Kibbe’s argument is over-stated and overly dramatic, especially the bit that lack of access to data is “pernicious and corrosive” and “so grave that, by itself, it has placed the nation’s future in peril.” I seriously doubt that data is systematically withheld and is the “deepest root of America’s health care crisis.” But I respect their opinion and their right to say it.

But alas, life and the reform of health care is not that simple. Today’s news and a personal experience illustrates some of the problems.

• A study by Senator Jay Rockefeller released this day and reported upon the Associated Press, New York Times and Wall Street Journal reveals that the database owned by Ingenix, a subsidiary of United Health Care, and used by most of the nation’s health plans, systematically underpaid doctors and forced patients who visited out-of-network doctors to pay up extra amounts of money. This is an example of lack of transparency, and the patients should have been apprised of the data, but the health plans had signed a contract saying they would not do so.

• A second report on a data study is from the June 22 New York Times, “Abnormal Test Results May Not Get to Patients.” In a study of 5, 434 patients, Researchers studying office procedures among primary care physicians found evidence that more than 7 percent of clinically significant findings were never reported to the patient. Or they may have been reported, but they were not documented. This does not seem to me to a big deal. It strikes me the fact that only 7% were not reported, and may simply have been from lack of documentation, is an affirmation. Maybe some of the “abnormal results” were frivolous.

• Yesterday I had blood drawn for a chemistry profile at a Quest drawing station. I asked that the data be sent to me, and they said they could not do that because that would be illegal in Connecticut. I do not know if this is a nationwide policy. I could only get the information from my primary care doctor. The doctor called on his own and said all tests were normal except for an elevated uric acid. I knew the reason for the high uric acid, having had a previous gout attack. But would the typical patient. There are roughly 100 causes of a high uric acid, including many drugs, such as Diuril, kidney disease, alcoholism, almost any disease with tissue breakdown. In addition, if you perform 20 or so tests on a chemical or hematologic profile, you will invariably get borderline statistically abnormal tests, which are no cause of alarm to the doctor, but may be to the patient.

Perhaps I’m unduly sensitive to reporting raw, uninterpreted data to patients. Not that some data should be reported immediately. In a laboratory I once ran, we got a blood glucose of 500. Because the state In which I practiced forbade reporting results directly to the patient, we tried desperately to track down the doctor – calling repeatedly, looking of his back-up, slipping the results under his door and delivering the results to his home. This was on a Friday. On Monday, the patient died of bowel infection, which was probably unrelated to his hyperglycemia We were sued for not reporting the result, which was illegal, and lost a $250,000 malpractice suit.

So yes, I believe data should be reported to the patient, but I also believe the doctor ought to interpret significant abnormal results before transferring the results