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PHRs Raise Many Issues
August 1, 2008
The personal health record landscape is rapidly changing. Many issues are being uncovered, including concerns over the privacy and security of an individual’s personal health information in the PHR; access and control of data; secondary uses of data; and sources, completeness, and reliability of data in the PHR.
Although less than a quarter of U.S. physicians use an electronic medical record, the public increasingly is demanding electronic access to their health information.
It’s unrealistic to expect that during a 15-minute clinic visit, a physician would spend time to go to a PHR Web site to review a patient’s health information. For those physicians practicing without an EMR, the “download” from the Web-based PHR would be one of transferring electronic information to paper. For physicians practicing with an EMR, the lack of health information technology standards would likely prohibit the direct electronic transfer of information from a PHR into their EMR, necessitating time-consuming duplicate documentation from one electronic system to another.
Will the PHR one day actually be the shared medical record? In such a scenario, the necessity of information transfer from one electronic system to another is eliminated, while potentially improving patient care and EMR clinician adoption.
The Ideal PHR
Let’s start with a baseline ideal PHR. From the point of view of the individual, the ideal PHR could enhance their health and wellness; facilitate improved care and care safety; improve communication across the individual’s care providers; permit critical information about the individual to be available in case of an emergency; and ultimately lead to truly individual-centric, personalized care. The ideal PHR also could produce data that, once de-identified, could be used for research and reporting that would transform medicine.
As our knowledge of medicine continues to grow exponentially, our ability to personalize the delivery of care has not kept pace.
Some groundbreaking large epidemiological studies—the Framingham and the Nurses studies—have enhanced our understanding of behavioral and genetic factors that contribute to disease processes. We are, however, unable to accurately predict which individuals with a disease will best respond to a particular treatment–or, more important, which individuals who appear to be at risk for developing a disease do not need preventive intervention because they will never develop the condition.
Such personalized predictive capability might be realized from large national epidemiological studies using de-identified electronic information from EMRs and PHRs. Clearly, personalized medicine would not only improve individuals’ treatments and outcomes, but also would result in the societal benefit of an enormous decrease in the cost of medical care in the U.S.
A trend in medicine is to determine physician “performance” as judged by their treating patients using evidence-based standards of care. This assumes that if these standards are adhered to, on average, patients will have improved outcomes. Unfortunately, payers are investigating provider adherence to established standards, not whether the standards actually result in an improved outcome for that particular patient over the long term. Evidence-based standardized care is not personalized care.
Pros and Cons
Providers and consumers alike are intensely debating whether the risks to an individual’s privacy and security outweigh the potential benefits of secondary uses of data. Obviously, it’s imperative that individuals’ privacy and security are maintained. Many experts believe, however, that privacy and security can be maintained while de-identified data is used for research purposes to enhance medicine and benefit our society.
Studies have shown that individuals are willing to have their information used for research purposes. Rather than creating a system where individuals must opt-in for the use of their de-identified PHR data for research, it is preferable to create an opt-out system where those individuals who do not want their de-identified data used for research can select not to. This would facilitate the majority of individuals who want to allow their data to be used for research to do so without requiring further action.
Finally, any financial benefit, either directly for the use of such data, or from eventual health care cost savings, should go to the individuals who are generously providing their de-identified data, not to the providers, payers or third-party vendors.
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