Personal Health Records and People Living with HIV

Content From: HIV.govPublished: May 05, 20093 min read


Chitra Mohla

I spoke with Chitra Mohla from the Office of the National Coordinator for Health Information Technology and their importance in the HIV community. A PHR allows you to store and manage all your information in one place. Chitra told me that people who are chronically ill are often the most motivated to use PHRs because they may have multiple appointments, medications, and health care providers. But before we talk about how PHRs can benefit people with HIV, let's start with the basics.

What is a Personal Health Record?

Personal health information can be stored in a variety of ways such as a paper record or electronically. Information stored in an electronic format is referred to as a “Personal Health Record” (PHR). They can be standalone, or Internet-based. Internet-based are tethered (linked to a provider, health plan or employer) or non-tethered (controlled by the individual). Online PHRs allow password-protected access to records anywhere, anytime via an Internet connection. Some recent examples that have been in the news are GoogleHealthExit Disclaimer and Microsoft HealthVaultExit Disclaimer. The Web site myPHR.comExit Disclaimer maintains a list of PHR vendors for patients and corporations and a list of frequently asked questionsExit Disclaimer. The Medicare website also provides answers to commonly asked questions about PHRs.

It is important to note that a PHR is not an “Electronic Health Record” (EHR)Exit Disclaimer which are generated, maintained, and controlled within an institution, such as a hospital, integrated delivery network, clinic, or physician office. Often, EHRs may have a PHR functionality where a patient may be able to access parts of their information in an EHR through a patient portal to review test results, schedule appointments, and to send secure messages to their providers.

What is next for PHRs?

As this technology develops, the next generation of PHR systems will allow people to link to various applications, such as tools that will capture information such as blood sugar levels, heart monitor results, and wireless transmission of weight readings, and store the information in the PHR. A recent report in Health AffairsExit Disclaimer found some of the barriers to implementing a PHR, including concerns about costs and privacy. There are a wide range of private and public entities that are working to address these issues.

How can PHRs help people living with HIV?

As Chitra mentioned, PHRs can be particularly valuable for people that are managing multiple providers, medications, and health complications. At the University of California San Francisco's Ward 86Exit Disclaimer (the outpatient HIV/AIDS clinic at San Francisco General Hospital) they have developed the Health Care Evaluation Record Organizer (HERO)Exit Disclaimer which is integrated with myHERO, “a publicly-accessible personal health record (PHR) enabling patients to access information online from their own medical record”. The director of HERO and myHERO, James KahnExit Disclaimer, MD, remarked that “a personal health record could interact with patients through automated mechanisms such as alerts or reminders and improve medication adherence.”

At, we've explored some of these possibilities in our posts about text messaging . We look forward to learning about other examples of PHRs being used by and for people living with HIV and how PHRs and new media can continue to empower, connect, and engage people in their own health care.