Report: Personal Health Records - Why Many PHRs Threaten Privacy

Personal Health Records: Introduction

Personal health records – or PHRs – are a relatively new phenomenon in health care today. As discussed here, a PHR is a health record about a consumer that includes data gathered from different sources (e.g., health care providers, insurers, the consumer, and third parties such as gyms and others) and is made accessible, often online, to the consumer and to those authorized by the consumer. Businesses large and small are moving to take advantage of the potentially lucrative new business model PHRs provide, especially as leveraged through the Internet. Some of the newest PHR players include large and well-known technology companies, but some health care providers, insurers, and employers also promote PHRs. There are dozens of different PHR vendors.

Personal Health Records: Discussion

The HIPAA privacy rule provides a degree of privacy protection for covered health records. The rule has problems and gaps, but it does establish minimum national privacy standards for disclosure, access, correction, and other elements of fair information practices. State laws that provide additional privacy protections remain in effect and can provide additional legal protections for privacy.

Personal Health Records: PHRs and Privilege

Many people are aware that health information may be privileged, but few – including some physicians – fully understand what that means. The physician-patient privilege (and the sometimes separate psychotherapist-patient privilege) offers some protections for confidential communications between physician and patient.

Personal Health Records: PHRs and Subpoenas

Health records, like just about any other record containing personal information held by a third party, can be subpoenaed under a variety of circumstances. For example, a consumer’s records could be sought in a tort suit (e.g., auto accident or medical malpractice), in a divorce or other family lawsuit, or sought if the records are relevant to someone else’s lawsuit. The rules governing subpoenas for health records are complex, and HIPAA includes some significant procedural protections.

Personal Health Records: PHRs and Marketing

Perhaps the biggest single concern about commercial PHRs is the possibility that a consumer’s health information will leak into the marketing system. The terms under which a PHR operates could allow the sale or rental of consumer information in the same way that magazines, catalog companies, magazines, charities, or other merchants and activities share information with limited or no consumer knowledge or consent. Consumers generally have some sense about how readily companies and agencies pass personal information around, but they do not expect the same kind of sharing when it comes to personal health information.

Personal Health Records: The PHR as a Depository

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.

Personal Health Records: PHRs and Linkage

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.

Personal Health Records: PHRs and Security

Security is an important part of privacy. Are PHR records more secure? The answer depends on who maintains the PHR and whether the security of the PHR is sufficient. Information held by health care vendors and insurers is subject to the HIPAA health record security rule. For what it is worth, the HIPAA security rule has attracted less criticism than the HIPAA privacy rule. Whether any given health record keeper is actually doing a good job of complying is hard to say.

Personal Health Records: PHRs and Correction

One basic privacy right is the right to seek correction of personal information that is incorrect or incomplete. This is a difficult area for health records because health care providers do not like to change records, and they strongly resist removing information from a record. Often, the resistance is reasonable. For example, a preliminary diagnosis may turn out to be wrong, but the record of the diagnosis must remain in the record to explain a particular test or treatment.

Personal Health Records: PHRs and Consents for Disclosure

Under HIPAA, if a consumer wants to authorize a covered entity to disclose her records, she will usually be obliged to sign an authorization form. The HIPAA rule prescribes the content of the authorization form and its scope. That rule provides some protections because it makes it harder for a consumer to unknowingly sign a form authorizing the disclosure of health records. For example, if a consumer signs a one-sentence form authorizing anyone with records about the consumer to disclose the records to the bearer of the form, it is unlikely that any doctor or hospital would or should honor that form.

Personal Health Records: PHRs and Privacy Policies

For a non-HIPAA covered PHR, the privacy policy becomes a key document, if it is available. The privacy policy of a PHR vendor may tell consumers how the vendor plans to use personal information. It is possible that a commercial or advertising-supported PHR will do a good job of protecting its clients from uninformed or casual disclosures of personal or health information. It is also possible that a cautious client will not be able to evaluate a PHR vendor’s policy or practice.

Personal Health Records: Conclusion

PHRs that operate outside of HIPAA can negatively affect the privacy interests of consumers in various ways. The best to hope for is that a PHR will not make privacy significantly worse. However, it is not likely that even that weak standard can be met. The existence of electronically available and centralized health information outside the traditional health care system will attract new users and create new risks. The mere adding of health records to a PHR vendor’s files may undermine existing privacy protections of old records. Security is a concern for any electronic records. A consumer’s ability to control the disclosure of PHR records can easily be compromised. The consumer’s ability to correct errors in PHR records may be problematic. Advertising support may not meet a PHR’s profit goals unless at least some consumer information is available for close targeting of ads. Promised PHR privacy protections may vanish overnight if the privacy policy is changed.