Health Records

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.

World Privacy Forum appointed to California Security and Privacy Advisory Board

Announcement | CalPSAB -- WPF executive director Pam Dixon has been appointed by California Secretary of Health and Human Services Kim Belshe to the California Security and Privacy Advisory Board. Dixon will serve as interim co-chair of the board, which is tasked with addressing health information exchange (HIE) privacy and security efforts in California. The board's meetings will be open to the public.

Briefing Paper - Responses to Medical Identity Theft: Eight best practices for helping victims of medical identity theft

Version 1: October 16, 2007 The World Privacy Forum, as part of its ongoing in-depth research into medical identity theft issues and responses, has outlined 8 best-practice responses to the crime by the health care sector. These best practices are based on interviews with victims, providers, and other stakeholders. These ...

Public Comments: World Privacy Forum files comments on CMS plan to allow release of patients' protected health information from Medicare database in some circumstances; benefits do not outweigh the risks

Medicare - CMS -- The World Privacy Forum filed extensive pubic comments on the substantive changes to the Medicare database release policy that the Centers for Medicare and Medicaid Services (CMS) has proposed in a System of Records Notice. As it currently stands, CMS is planning to release the individually identifiable protected health information of patients in the Medicare database to third parties in some circumstances. CMS has not established strong enough checks and controls on its release policy, and it has not explained how it is able to do this under HIPAA. The comments state that CMS has an obligation to explain how each routine use in its new policy is consistent with the authority in the HIPAA privacy rule. If a routine use allows disclosures that are broader than those permitted by HIPAA, then the routine use must be narrowed so that it is consistent with HIPAA. The comments also note that nothing in the CMS notice discusses substance abuse rules and other legal restrictions of the protected health data. The World Privacy Forum asked CMS to specify that the qualifications of any data aggregators who may potentially receive the data exclude any entity that sells other consumer data for any general business, credit, identification, or marketing purpose.

Update: World Privacy Forum's NHIN Timeline updated to reflect changes in AHIC

NHIN update -- The National Health Information Network, or NHIN, is part of a major undertaking to digitize and network the health care sector. From electronic health records to multi-state health information hubs, the U.S. government's goal is to modernize and move health care information from paper to digital. The Department of Health and Human Services is the primary mover behind this initiative, which is complex and multi-faceted. The World Privacy Forum keeps a chronology of NHIN events as a public service. The NHIN timeline has been updated to reflect changes in AHIC, a group that is charged in part with ensuring privacy and confidentiality in the NHIN and other aspects of health care modernization. AHIC is set to transition to a "public-private partnership," a move that will need to be watched closely to ensure robust consumer involvement.

World Privacy Forum requests that the new National Disaster Medical System protect all patient information to standards at least equal to HIPAA

National Disaster Medical System | Privacy Act of 1974 -- The World Privacy Forum has filed public comments with the Department of Health and Human Services requesting that its new National Disaster Medical System protect all patient information to at least the baseline protections that HIPAA affords, including the HIPAA security and privacy protections. Currently, the new system does not do this, even though the system is housed at HHS, the agency which promulgated the HIPAA standards. The National Disaster Medical System currently contains overbroad routine uses which could potentially result in significant privacy and even public health issues. For example, public health information will not be able to be disclosed under the National Disaster Medical System as the system is currently organized. Additionally, some of the current routine uses in the system would authorize disclosures that would be illegal under HIPAA. For example, Congressional disclosure of a HIPAA record requires a written authorization, something the new system does not require.

Update: World Privacy Forum's National Health Information Network Timeline

National Health Information Network -- Recently, the first live prototypes of the NHIN were demonstrated in Washington, D.C. This was a milestone event in the development of the planned network. The National Health Information Network is an ambitious project the U.S. government undertook in 2004 to digitize and network patient health records across the nation. This project raises challenging confidentiality, privacy, and security issues.

President's Identity Theft Task Force: World Privacy Forum requests that medical identity theft be added to task force agenda

Identity Theft -- The World Privacy Forum filed comments and recommendations with the President's Identity Theft Task Force. The task force's draft report and recommendations did not include or contemplate medical identity theft solutions for victims; the WPF has requested and recommended that this be corrected. Medical identity theft victims need more help, more recourse, and agency attention.

World Privacy Forum Requests That CMS Bring Its Medicare Part D Data Activities Under HIPAA and Require Certificates of Confidentiality to Protect Patient Privacy

Medical privacy | Medicare Part D -- In comments filed with the Centers for Medicare and Medicaid Services, the World Privacy Forum requested that CMS give effect to data restrictions that Congress has expressly included in the law. WPF also requested that CMS include in its standard agreements for use of CMS data a requirement that the recipient obtain a certification of confidentiality for all identifiable CMS data. WPF also requested that CMS perform a regulatory impact analysis and publish a system of records notice.

World Privacy Forum Files Comments About Proposed Changes to HIPAA

Medical privacy | HIPAA -- Five groups joined the World Privacy Forum in asking for changes to be made to a proposed rule on how medical healthcare claims attachments are handled electronically. The World Privacy Forum and the EFF, EPIC, Privacy Rights Clearinghouse, Privacy Activism and U.S. Public Interest Research Group (U.S. PIRG) asked that physicians be given more control over what parts of health records they send electronically to insurance companies, that psychotherapy notes not be included when sending health records for insurance payment, and that the HIPAA Privacy Rule be rigorously applied to scanned health records.