Personal Health Records: PHRs and Linkage

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Some privacy protections exist because independent health care providers maintain separate records about consumers. A dentist has one set of records; a family doctor has another set. It will often be the case that the two sets of records are not linked or shared routinely. However, those who obtain health care from a single health maintenance organization may already have centralized records. Linkage of health records offers some advantages, but not all linkages are necessarily welcome to consumers.

A consumer may not care to let her dentist know that she is under psychiatric care. Another consumer will not want a health plan or employer to know about a genetic test paid for out-of- pocket. A third consumer may not want anyone to know that he sought treatment for a sexually transmitted disease. For good reasons or not, people may want to keep some of their health information strictly private, even within the health care community. Consider a college student who drank too much alcohol and ended up in the emergency room. Consider a soldier who visited a psychiatrist due to suicidal thoughts. Consider people who had a learning disability in their youth. Other sensitive conditions may include attention deficit disorder, weight problems, cosmetic surgery, bedwetting, and others. Many people have some information in their health records than they are not comfortable sharing with anyone, especially years later.

As time passes, as people move, and as people change physicians, older information tends to disappear, get lost, or remain disconnected from current information. That benefits privacy, although the loss of some old information may sometimes, but not always, negatively affect health care. PHRs may bring old information together in ways that may not please consumers all of the time.

When a consumer consents to place health information in a PHR, how much actual control will the consumer have over this kind of file linkage? A consumer may be willing to share information with one health care provider but not another. Another may not be willing to tell a spouse or other family member about some parts of a medical history. Suppose that a niece is looking after her aunt following hip-replacement surgery. The aunt may not want her to see the part of the record that revealed a history of alcoholism or drug abuse. Controlling disclosures of recorded health information can be complicated because consumers may be willing to share some information all of the time, all information some of the time, and other information never.

Does a PHR provide the tools that allow consumers make these decisions? It may not be enough if a consumer can only decide who can or cannot see a health record. A consumer may need to be able to exercise a finely granulated degree of control across time, people, and information. The sharing of information within a family and across generations may be especially complicated. Health records may reveal secret information not shared widely within a family, between parent and children, or between spouses. The disclosure of family medical secrets has the potential to poison relationships and undermine marriages.

HIPAA offers some controls over disclosure to family members and to caregivers. The HIPAA tools are not perfect, and much depends on how health care providers exercise the discretion that they have. However, relying on health professionals to make decisions about information disclosure may be more comforting than rules applied by a computer. Oral disclosures are more easily limited to current treatment information, and health care providers must accept direction from patients on family disclosures. Each PHR user must assess if a PHR provides the tools to keep health information out of unwanted hands and to put that information only into the right hands. An all-or-none approach to information sharing is not likely to meet everyone’s needs.

Another type of health record linkage is likely to be refused by PHRs. Some records – principally those covering treatment for drug and alcohol abuse – have strong statutory protections that follow the record even when the consumer consents to the disclosure. The restrictions are strict, and it is possible that a PHR will refuse to accept information that comes with special privacy restrictions. The result may be that for some consumers, a PHR cannot even fulfill the promise of bringing all of the consumer’s records in one place. Similar problems might arise with records about genetics, HIV/AIDS, and psychiatric treatment. Some physicians may also refuse to share records with a PHR, even if the consumer requests sharing. Any of these limitation may be a good thing or a bad thing, depending on a person’s perspective and medical history.

Yet another type of linkage may happen if the PHR vendor also offers other Internet services. If the PHR vendor also has access to a consumer’s email through an email service, to a consumer’s documents through an online storage service, or to a consumer’s Internet searches through a search service, the information that the PHR vendor collects through the consumer’s use of the company’s other online services could potentially be linked to the PHR record. Much will depend on how the company decides to link – or not – the data. The profiling of consumers through the Internet and other digitally intermediated activities is a major activity today, and the addition of health information to profiles could make the data even more valuable to marketers.



Roadmap: Personal Health Records – Why Many PHRs Threaten Privacy: II. Discussion – PHRs and Linkage


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