Chasing Online Health Data Technology

In two previous blogs I talked about issues related to online electronic health information. One focused on Google’s and Microsoft’s efforts to build online personal health records, and the other addressed advertising supported electronic medical records. It seems this issue of online health records is white hot as this week the prestigious New England Journal of Medicine published three articles on the subject.

Like in so many other things in our daily lives, the technology is getting ahead of the social norms and legal controls that are utilized to organize our lives, protect us and set our expectations. The question inherent in all three NEJM articles is “How should a patient manage their own health data and what, if any, limits should be put upon those patient’s control?

On first blush, the answer seems an easy one – “No restraints at all as the data belongs to the patient.” That approach seems reasonable except when you consider the ways the patient’s data, given in good faith, could be used against the patient.

For example, as these online PHRs are not covered by HIPAA and its privacy conditions, a research institution could purchase the patient data for use in a clinical trial and then just as easily sell it to an insurance company which uses it to screen insurance applicants. Conceivably, the patient in the trial with a pre-existing condition could unknowingly be denied medical coverage or life insurance.

Sure, the contract between the patient and the research institution could be written to protect the patient but I ask, “How many times have you read the user agreement fine print when registering at a web site?”

We can accept the condition of “Caveat emptor” and apply it to online healthcare data but that seems rather heartless. Do we not we protect credit card users from their own foolish behaviors through federal statute that criminalizes fraud and holds the cardholder harmless beyond a token $50?

Authors Mandl and Kohane posed the question best in their NEJM article when they wrote:

“Our society should make an informed decision about how the goals of improving health care, and the twin beacons of maximizing patient autonomy while minimizing health risk, should be served in the context of a seismic change in the locus of control, curation, interpretation, and guardianship of patient information.”

The technology is way ahead of us, and unless we catch up and control it we will be at great risk. Either the technology will help us deliver safer, higher quality care more efficiently while exponentially expanding our ability to conduct medical research, or it will poison the well of promise of better healthcare through its violation of privacy and its negative influence on our healthcare decisions.

Further Reading:
New York TImes, April 17, 2008: Warning on Storage of Health Records by Steve Lohr