Personal Health Records: Hope or Hype?

The Personal Health Record (PHR) should finally allow patients to control their own Protected Health Information (PHI), allow them to assign ‘agents’ such as parents acting for children, or, in the later stages of life, children acting for parents.  Eventually the goal is to enable seamless integration with the EHR and allow patients access to their PHI online, or through some other form of media, and to use it as a vehicle for communication with the healthcare provider.  As the HHS says, “…the individual shall have a right to obtain from such covered entity a copy of such information in an electronic format and, if the individual chooses, to direct the covered entity to transmit such copy directly to an entity or person designated by the individual, provided that any such choice is clear, conspicuous, and specific.”

There are several challenges that must be met:

• Stage 1 criteria for Meaningful Use recommendations includes the provision for hospitals: “Provide patients and families with timely access to data, knowledge, and tools to make informed decisions and to manage their health…Electronic copies may be provided through a number of secure electronic methods (for example, personal health record (PHR), patient portal, CD, USB drive).”  However, currently, “We do not propose to include the objective ‘‘Provide access to patient specific education resources upon request.” This is because there is a lack of resources to address this critical need – patients need to understand what the data in their medical records actually mean, usually without the benefit of a medical education.
• Many interpret HIEs as exchange of information between healthcare providers, payors, and others, but not the patient.  To be successful, if health information exchange is to be successful, the approach must be patient-centric, and issues such as security, HIPAA compliance, and patient usability must be addressed.
• Although electronic PHRs may be possible for many, what about those individuals who do not have internet access, are not computer literate, or have poor reading and communication skills?  What is an alternative for this very sizable subpopulation of patients?

The early promise of widespread dissemination and use of PHRs has only been realized in a few settings. In theory, they allow the patient to upload biometric data such as vital signs, medication usage, and access wellness applications. Microsoft’s HealthVault® now seems to be the dominant application, in part, because it allows ease of third party development. Google Health® has been more focused on wellness applications, and Epic’s MyChart® has been a standard in hospital environments such as Cleveland Clinic, to mention a few examples.

Early implementations have shown mixed results:

• The Military Health System’s prototype PHR “MiCare”, launched at the Madigan Army Medical Center (MAMC) in Tacoma, WA, in which patients could choose Microsoft HealthVault® or Google Health®, has demonstrated what can be achieved and is being deployed more broadly within the joint VA/DOD VistA system.
• John Halamka, MD, Chief Information Officer, Beth Israel Deaconess Medical Center and Harvard Medical School, has emphasized both that “Patients should be stewards of their own data…with transparency being a win for everyone.,” but appears to have also encountered some difficulties when patients demand their own stewardship (see http://www.healthcareitnews.com/news/halamka-bates-spotlight-health-it-use-boston), and this in Boston, where over 75% of healthcare facilities have EHRs, or are in the process of adopting EHRs.

To date, consumer adoption of the PHR is poor (<5% of the U.S. population), so PHR vendors most often provide them for free to providers and payers for their patients. Demographics for the adoption of any PHR are mostly female upper middle class consumers, chronic care patients, younger consumers, working mothers with medical proxy, and web-savvy consumers. There exists a ‘digital divide’ that separates ‘advantaged’ from ‘disadvantaged’ consumers (see Figure below). In a recent publication, Kim et al (2009 – see http://www.jmir.org/2009/4/e44/) examined low-income, elderly patients that were provided with free internet access and personalized support for computer access. They found that, although the internet was available for free and personal assistance was provided without any cost to residents, only 13% of eligible residents used the system, and system usage was very limited.

This is a feature of many large urban and rural hospital settings, where patients may not have internet access, do not feel at ease using computers, or have poor literacy or declining cognitive skills. As Kim et al (2009) emphasize, this may actually increase the disparity between high income and low income populations with regards to understanding and managing their own health – probably not a goal of current Federal HIT guidelines. How can this challenge be addressed?  Well, an obvious solution is to provide a simple PHR in paper form, which could be updated with the assistance of family members or healthcare providers.

“Digital Divide” between patients who can benefit from electronic PHRs, and those patients, who may have the most need but may not benefit. (Adapted from Kim et al, 2009):