There is a difference between voluntary, involuntary and mandatory data collection …

Unlike Facebook, where a user VOLUNTARILY provides non-public personal information to a company knowing that it will be data-mined for sale to advertisers as an aid to producing narrowly-targeted advertising; ostensibly as a benefit to the consumer in reducing spam and to the advertiser in reducing unproductive costs, certain private companies are now attempting to monetize transactional data for the same purposes. Many consumers also give grocery stores, pharmacies and other shops the same VOLUNTARY right to their data by using affinity cards in return for in-store discounts and access to other promotions. Unfortunately, in these cases, the consumer has no rights to review the data, even if it contains gross errors.

As we have seen with credit reporting agencies, financial institutions have exerted their right to control your transactional data and provide this personal and non-public information to credit reporting agencies as a public service to consumers … to reduce the amount of effort and paperwork needed to verify your credit-related information and provide you with stress-free credit opportunities. Your right to review your data and correct erroneous data  is guaranteed by federal statute; although you should be aware that the consumer disclosure report is far different from the report actually sent to subscriber companies requesting your data. 

But, what if your telephone company exerted the same type of transactional claim and used your telephone record to serve targeted advertising in return for a discount on your voice or data plan? You might be just a little more concerned about how that data is being used and who is allowed to see it.

Now, physicians are attempting to limit how much of their patient’s data they should be able to access as we move to government-mandate electronic health records … 

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

A new Accenture survey shows that most U.S. doctors surveyed (82 percent) want patients to actively participate in their own healthcare by updating their electronic health records. However, only a third of physicians (31 percent) believe a patient should have full access to his or her own record, 65 percent believe patients should have limited access and 4 percent say they should have no access (See figure 1). These findings were consistent among 3,700 doctors surveyed by Accenture in eight countries: Australia, Canada, England, France, Germany, Singapore, Spain and the United States.

Patients Access to Records

While nearly half of U.S. doctors (47 percent) surveyed believe patients should not be able to update their lab test results, the >vast majority believe patients should be able to update some or all of the standard information in their health records, including demographics (95 percent), family medical history (88 percent), medications (87 percent) and allergies (85 percent).And, the majority of doctors (81 percent) believe patients should even be able to add such clinical updates to their records as new symptoms or self-measured metrics, including blood pressure and glucose levels.

“Many physicians believe that patients should take an active role in managing their own health information, because it fosters personal responsibility and ownership and enables both the patient and doctor to track progress outside scheduled appointments,” said Mark Knickrehm, global managing director of Accenture Health. “Several U.S. health systems have proven that the benefits outweigh the risks in allowing patients open access to their health records, and we expect this trend to continue."

In fact, nearly half of doctors surveyed (49 percent) believe that giving patients access to their records is crucial to providing effective care. But, only 21 percent of doctors surveyed currently allow patients to have online access to their medical summary or patient chart, the most basic form of a patient’s record.

Perceptions of Electronic Health Records

More than half of doctors surveyed (53 percent) believe that the introduction of electronic health records has improved the quality of patient care, and the overwhelming majority (84 percent) say they are somewhat or strongly committed to promoting electronic records in their clinical practice. Most (77 percent) believe the right investments in adopting electronic records are being made and 83 percent believe they will become integral to effective patient care in the next two years.

I have mixed feelings about electronic healthcare records.

One, I believe that there should be tight security on all medical records and that an inviolable access log; along with criminal and civil penalties for the inappropriate use of medical records for commercial, political or personal use by unauthorized personnel.

Two, I believe that there should be specific controls on information releases, including probable-cause subpoenas, controls on overly-broad releases of the entire record, governmental access controls and insurance company controls. I do not believe a patient should be allowed to issue a unilateral release for any and all medical information as a routine part of dealing with an insurance company or any other entity.

Three, I believe that medical records should be divided into three components: primary medical record containing exam and test results along with the doctor’s impressions; a secondary medical record containing confidential information that should not be reviewed or released to any third-party; and a patient area for anecdotal information and uncalibrated instrument test results.

Four, I believe that the patient should have the right to review all of the medical records, but that the update procedure should be formalized and the information reviewed by a doctor if it is entered in a primary record.  Primarily because of low-quality scanned information and the uncertainty of illegible handwriting which can be misinterpreted.

Five, I believe that a patient should also have access to the coding used to describe their visits and treatments as many doctors falsify or shade coding to maximize their insurance payments – coding which may portray the patient in a wrong light or add non-existent conditions and complications to the record.

In the final analysis, while I trust my doctor implicitly with my medical care, I have my doubts about his medical coders and the ability of his staff to even place the right information in the right file. This is a serious subject which must be given serious attention as we move forward with electronic health records.

-- steve