Personal Health Records: The PHR as a Depository

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Some PHRs present themselves as a depository of health information under the control of the consumer. The suggestion is that the records have inherent privacy protections because the consumer has some choices or control over the record, including who may see, add to, or change the record. By contrast, covered entities under HIPAA can disclose health records to many institutions for many purposes without consumer consent. That is one of the controversial aspects of HIPAA. HIPAA allows many disclosures without the consent of – and indeed over the objections of – the consumer.

Will a consumer-controlled health record deposited in a PHR add to or protect the privacy of the records? Nothing about the PHR changes the reality of health privacy protection, except that the information is now duplicated in a new location and subject to the rules of a new organization. No matter how much control a consumer may have over his or her PHR records, a PHR depository does nothing to improve the general privacy of health records. Even if the PHR’s privacy and security controls work perfectly, the records now exist in one more location than before and may have additional vulnerabilities.

Suppose that a consumer has a totally secure safe in her home that can only be opened with her express approval. The consumer writes down her Social Security Number (SSN) on a piece of paper and puts that paper in the safe. Is her SSN more protected than before?

Not really. Everyone else who had the SSN before the paper was deposited in the safe still has it. That includes banks, the IRS, credit bureaus, employers, the Social Security Administration, a partner or spouse, and perhaps dozens of other agencies and organizations. The locked safe does nothing to enhance the privacy of the SSN, although the privacy and security of that one piece of paper may well be improved.

For health records, the information in the PHR must originate from somewhere. Prime sources are physicians and insurers, but in some PHRs consumers can also add information about their use of supplements, gyms, and so forth. The health information about consumers held by their physicians, health plans, dentists, laboratories, pharmacies, and others remains exactly where it was before it entered the PHR. That information is subject to the same good or bad rules or practices that applied before the deposit of the information in the PHR.

No one who had the ability to obtain health information before a copy entered the PHR need pay any attention to the PHR or any consumer controls on the PHR. The records that were available before from other sources remains available. For example, health fraud investigators can obtain patient records for their work. Putting a record in the PHR changes nothing because the fraud investigators can still obtain the record from the physician or health plan. The PHR record is a copy but not the only copy. Consumers who see the control promised by PHR vendors may be easily confused about the meaning of that control.



Roadmap: Personal Health Records – Why Many PHRs Threaten Privacy: II. Discussion - The PHR as a Depository


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