Nurses have always promoted self-care and active participation of individuals in managing their healthcare. The electronic personal health record (PHR), a tool to assist individuals in managing healthcare by maintaining their own health records, is one of the hottest issues in health information technology (IT) today. This summer, the University of Maryland nursing informatics conference will focus on patient-centered records (http://www.nursing.umaryland.edu/sini/index.htm).

What Is a Personal Health Record?

A recent report on health information terminology defines a PHR as an electronic record of health-related information on an individual that is drawn from multiple sources and managed, shared, and controlled by the individual (Department of Health and Human Services, 2008). The individual creates one central PHR by collecting health information and then becomes the guardian of that information. Information might come from and be exchanged with providers (e.g., clinician offices, hospitals, pharmacies, labs, schools), health insurers, medical devices, and wellness guidelines. The PHR is centered on the patient-not the provider or institution-and remains intact when the patient changes jobs, providers, or insurance.

The PHR might be a file on a computer storage device (CD-ROM, USB flash drive, or smart card) that can be printed or shared with another computer using file copying; or it might be an Internet file that exists on a Web server and can be shared with other computers connected to the Internet. The IT private sector recently released a number of Web-based portals, including Google Health (http://www.google.com/health) and Microsoft HealthVault (http://www.healthvault.com), both of which are examples of PHR.

Using Google Health, for instance, an individual creates a username and password, builds a health profile (i.e., date of birth, sex, height, weight, blood type, ethnicity, conditions, medications, allergies, lab results, immunizations), imports medical records (from selected partners such as hospitals, clinics, pharmacies), vaccine guidelines, even the American Heart Association Heart Attack Risk Calculator, and connects to monitoring devices and health information article and videos. All of this takes place with no fees paid to Google. The PHR connects to other Google functions, so when the user searches for a healthcare provider, the healthcare provider is entered in the user's e-mail addresses and a map to the healthcare provider location is provided.

What Are the Issues About PHRs?

Web-based PHRs raise important ethical issues, including data quality and integrity, privacy and security, and ownership of information. Google Health provides a health privacy policy, states that they do not sell the individual's information or customize advertising, denies any financial relationships with healthcare providers to which they are linked, and allows the user to choose what information to keep private and what to share. The individual may delete information from the health record at any time. Google does, however, de-identify and aggregate health information to create trend statistics, which it makes available on the Web site. The privacy policy describes the Health Insurance Portability and Accountability Act (HIPAA) requirement to authorize sharing of medical record information to Google; however, the user must also authorize Google, a non-HIPAA entity, to share sensitive information. The various types of sensitive information are outlined in the authorization form (e.g., mental illness, substance abuse, HIV, pregnancy, family planning, and genetic conditions).

Nurses play an essential role in PHR creation, policy, and use. Although PHR benefits might include such items as a complete and accessible obstetrical record across providers, an accurate asthma treatment history for a child during an emergency room visit out of town, or a connection to a diabetes management program for a child, families need guidance in managing information and negotiating ethical issues. Nurses have never played a more important role in teaching and advocating for families with information management. How can we provide this? Take a tour on the Google Health page (or a similar portal), explore what is available, examine the privacy policies, learn about the health IT terms, and then discuss these issues in your professional circles.

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