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Personal Health Records and People Living with HIV

I spoke with Chitra Mohla from the Office of the National Coordinator for Health Information Technology to learn more about Personal Health Records (PHRs) Exit Disclaimer 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 GoogleHealth Exit Disclaimer and Microsoft HealthVault Exit Disclaimer. The Web site myPHR.com Exit Disclaimer maintains a list of PHR vendors for patients and corporations and a list of frequently asked questions Exit 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 Affairs Exit 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 86 Exit 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 Exit Disclaimer, “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 Kahn Exit 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 AIDS.gov, we've explored some of these possibilities in our posts about text messaging and patient-centered social networking sites like Patients Like Me Exit Disclaimer. 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.

Comments

  1. fas says:

    I wasn’t aware about an electronic way of keeping records. That is really a nice and sensible way of maintaining records for all.

  2. Rob says:

    This is great – I have been using HealthVault for a little while with great success. Remembering what to ask my doctor was always a problem, but visits are much smoother now, and there are some cool tracking tools that make my life a little easier, too. Well worth checking out!

  3. lori says:

    I think that the benefits of PHRs outweigh the potential downside. I also think they help promote a team effort between doctors and patients, and that is sure to generate a positive outcome. I am also using Microsoft HealthVault, and it has a lot of great tools available, too.

  4. Jay Andrews says:

    A personal health record or PHR is typically a health record that is initiated and maintained by an individual. An ideal PHR would provide a complete and accurate summary of the health and medical history of an individual by gathering data from many sources and making this information accessible online to anyone who has the necessary electronic credentials to view the information

  5. lori says:

    To Jay’s point, complete usability is key to success; PHRs are a good thing to have, but when they can be shared back and forth between the patient and their physician(s), then you have a truly effective communication platform. I believe that is the goal here. HealthVault was created to make sharing possible, but only the files that the user/patient wants to share, and they also can determine how long that “sharing” access is permitted.

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