A personal health record (PHR) is a collection of health-related information that is documented and maintained by the individual it pertains to.
The data kept in a PHR varies from one person to another and from one system to another, but information in a typical record might include:
- Information about visits to healthcare professionals
- Family history
- Information about any conditions or diseases
- A list of medications taken
- Records of hospitalization
- Information about any surgeries or procedures performed
How the term 'personal health record' has evolved
While PHRs have existed since the 1990s, it wasn't until 2007 when large technology companies, such as Microsoft and Google, began to create and offer PHR products, according to the American Health Lawyers Association. Google's PHR product is no longer available.
This was followed by the creation of Dossia, a web-based framework for PHRs, in 2008 by a consortium of companies including Walmart and AT&T.
Since then, there has been some debate about what is considered a PHR. Ultimately, this boils down to stand-alone PHRs versus tethered PHRs.
With stand-alone PHRs, patients input information into their own records and the information is stored on the patients' computers or the internet. Patients can decide whether to share their information with providers, family members or anyone else involved in their care. In some cases, a stand-alone PHR can also accept data from external sources, such as laboratories or providers. Ultimately, however, the information in the PHR is managed by the individual. Many consider this to be a true PHR.
A tethered PHR, on the other hand, is linked to a specific healthcare organization's electronic health record (EHR) system. Patients can access their records in a tethered PHR through a secure portal. Many believe that a tethered PHR and a patient portal are the same thing and, therefore, a tethered PHR is not truly a PHR.
PHR vs. EHR
According to the Office of the National Coordinator (ONC) for Health IT, an EHR -- also known as an electronic medical record (EMR) -- is a digital patient health record that consists mainly of notes and information collected by and for clinicians. EHRs are built to share information with other healthcare providers and contain information from all the providers and healthcare organizations involved with a patient's care. It is meant to aid in providing care to a patient.
While a PHR contains the same types of information as an EHR, it is set up and designed to be accessed and managed by patients themselves.
Benefits of PHRs
According to the ONC, benefits of PHRs include the following:
- Improved patient engagement: Having information and tools to manage health and the ability to track health over time helps involve patients in their own healthcare. Furthermore, much of what patients do for their health happens outside the four walls of a doctor's office. PHRs allow the patient to document these events.
- Better access to patient information: In emergencies or when a patient is traveling, PHRs help ensure their health information is available to them whenever they need it.
- Improved management of information from multiple providers: PHRs help patients manage information from various providers and can help improve care coordination.
- Reduced administrative costs: PHRs reduce the burden on healthcare organizations such that staff will spend less time searching for patient-requested information and responding to patient questions.
- Better patient-provider communication: PHRs can improve communication between the patient and physicians by providing direct, secure communication methods.
- Ability to manage family healthcare: PHRs can help caregivers, including family members, better manage the patient's care and help coordinate with other caregivers.
Barriers to PHRs
Despite the potential benefits, there are a number of challenges facing PHRs. These challenges range from privacy and security concerns to lack of use and adoption.
Data accuracy: When patients or consumers enter and update their own health records, concerns about data accuracy arise. Sometimes, users need to be informed and guided on how to abstract relevant information from prescription labels and test reports, for example.
Data privacy and security: There are less stringent data protection requirements in place for PHRs. Also, vendors that provide stand-alone PHRs are not covered by the Health Insurance Portability and Accountability Act (HIPAA) because they are not a covered entity such as a hospital. Only PHRs that are tethered to a healthcare organization's EHR are covered.
Congress addressed privacy and security requirements for PHRs for the first time in the American Recovery and Reinvestment Act of 2009, under which PHR vendors are required to notify affected individuals and federal regulatory entities of security breaches involving an individual's personal health information or other identifiable health information.
Disparity issues and adoption rates: Although a study published in the Journal of Medical Internet Research expected that 75% of consumers are expected to have adopted a PHR by 2020, a digital divide has been created due to consumers who have low computer competency and health literacy. These low-literacy consumers are less likely to use PHRs.
There are several PHR options out there for patients to use. Here are some examples of the options available:
Dossia: Backed by companies such as Walmart, Intel and more, Dossia provides an untethered PHR that draws from multiple data sources and allows the patient to keep their PHR even if the patient changes health plans, doctors or employers.
HealthVault: Microsoft's PHR allows for organization of family members' health data, preparation for doctors' appointments and unexpected emergencies, and a comprehensive look into the patient's health.
Health Manager: WebMD offers a PHR that enables patients to store personal and family health records.
MyPHR: This PHR from the American Health Information Management Association (AHIMA) offers medical record storage for parents, seniors, the chronically ill and caregivers.