Personal health records often are touted as a way to engage patients by giving them control over their own health care. However, it turns out that personal health records might not be so personal.
A recent study published in the Journal of the American Medical Informatics Association found that PHRs aren't as patient centered as perhaps they should be. Researchers at Beth Israel Deaconess Medical Center assessed the patient centeredness of PHR systems at seven large early adopter organizations in 2007.
The study, which was supported by the Commonwealth Fund, found that while most of the organizations offered some patient-centered functions, there is still plenty of room for improvement.
Study Details
Shane Reti -- an author of the report and a physician at Beth Israel Deaconess Medical Center -- said he got the idea for the study after attending a national informatics conference where speakers and audience members repeatedly made reference to the fact that they were only aware of their own organizations' PHR policies. He said that it struck him "that no one knew what everyone else was doing, that PHRs were being developed in silos and that the good and not so good experiences were not being shared in the environment."
Reti said the study aims to provide the industry with insight into "what is being done and what can be done."
Researchers conducted semi-structured interviews at seven early adopter organizations representing a variety of U.S. health care settings:
- Aetna;
- Beth Israel Deaconess Medical Center in Boston;
- Brigham and Women's Hospital in Boston;
- Kaiser Foundation Health Plan in Oakland, Calif.;
- Medem;
- Palo Alto Medical Foundation in California; and
- The Veterans Health Administration.
Researchers assessed the following 10 PHR policies at each organization:
- Patient proxies enable PHR access;
- PHR access for minors;
- Patient views of electronic health record clinical notes;
- Patient views of EHR diagnosis list;
- Patient control of information access;
- Research using self-entered data;
- Third-party PHR Web advertising;
- Emergency, "break the glass" access;
- Normal lab results PHR availability; and
- Clinical response to patient e-mails.
Reti said, "No one PHR clearly stuck out from the group as being obviously more patient-centric than another; however, if one could pick and choose functions from various PHRs -- other than access to clinical notes -- one could construct almost the ideal patient-centered PHR."
The researchers attributed some of the variance in patient centeredness to state regulations, organizational policies and personal preferences.
Medem -- which in 2009 sold its PHR product to Medfusion -- was the only commercial PHR vendor included in the study.
Reti noted that other commercial PHR products, such as Google Health and Microsoft HealthVault, actually lead the field when it comes to patient-centered functions. He said that because such firms are not considered covered entities under HIPAA, they are not bound by the same privacy and security regulations. Reti said that Google and Microsoft still comply with HIPAA regulations, but they "are able to be more creative and move quicker because they don't require the same sign offs and double checks of HIPAA."
Improving Patient Centeredness of PHRs
Nir Menachemi -- an associate professor in the Department of Health Care Organization and Policy at the University of Alabama's School of Public Health -- said he did not find the results of the study surprising.
Menachemi said, "I think at least PHRs I've seen or interacted with myself as a patient are sometimes not patient centered, not because of policies but because of technical issues with how information is processed through the PHR." He added, "I had a PHR previously that I don't really use anymore, partly because there was an overwhelming amount of non-relevant information that was being fed into it from claims data."
Reti said that since the study was conducted at the end of 2007, there's been little improvement in the patient centeredness of PHRs. He said that PHRs "are not a mature technology, but they are adopting some maturity, and with maturity what you get is tweaks of features, rather than abundant new features being added."
According to Reti, the next big step for PHRs is opening up clinical notes to patients. He noted that Beth Israel and two other hospitals are conducting a pilot project to provide patients with access to their clinical notes through their PHRs.
Menachemi noted that different generations' "needs and their expectations about what they get in all aspects of their lives, especially technology, could not be more different." He said, "I sometimes get uncomfortable when someone tries to pitch a consumer-friendly application, like a PHR, as a one size fits all."
Menachemi predicted that in the next five years, there will "be a lot more information about what people want out of a PHR." He added that what people want and what people are using will begin to dictate PHR functionality.
Getting to a PHR Adoption Tipping Point
A recent California HealthCare Foundation survey found that just 7% of U.S. adults use a PHR. CHCF is the publisher of iHealthBeat.
Reti said that patients who use PHRs love the technology. He said, "I can't think of one person who is not feeling they're getting better health care through a personal health record."
"Personal health records are a key and fundamental part of contemporary and modern health care systems," Reti said, adding, "I think they'll reach some tipping point, like ATM machine cards." He said that the tipping point will be driven by consumer pressure.
Menachemi said that for the country to reach a tipping point in PHR adoption, "there is going to have to be a lot of education." He noted that many people don't understand what a PHR is.
Menachemi said, "I teach a graduate course on health IT and when we talk about PHRs, no one in the classroom, many of [whom] are physicians, have even heard of such a thing."