For several years, the healthcare community has struggled with elusive beast known as a personal health record. The PHR was designed to fill a hole in the sharing of electronic health data by getting patients involved with filling in gaps in their own health information via a Web browser.
The idea is not new. In fact, according to WIkipedia, the idea of a “personal health log” goes all the way back to the 1950s, though scientific literature didn’t begin to take it on until after 2000, the Web encyclopedia says. So for decades, healthcare professionals have looked at ways in which private individuals could do more to document changes in their own health.
Fast forward to today, and what have we got? A bunch of approaches which involve the consumer in their medical data, including:
Patient portals: Typically, these portals offer access not only to various forms of basic clinical data — such as test results — but also a means of setting appointments with doctors’ offices and a means of communicating with physicians via secure e-mail.
Direct access to EMRs: In some cases, the portal established by a healthcare organization offers some limited direct acccess to EMR data, offering patients a look at a broader cross-section of data.
Giving patients access to doctors’ notes: Of late, some organizations have been experimenting with giving patients direct access to their doctors’ notes, experiments which have largely been satisfying to parties on both sides of the equasion.
Certainly, these approaches involve patients more in their health information, but at the same time, in no way make him or her responsible for maintaining their own health records electronically.
If you’ll notice, the core notion of a PHR — that patients should keep their doctors informed of med changes, allergies, procedures and the like — appears to have dropped out of the picture completely. It seems that after struggling with getting patients involved in being data entry clerks, it works much better to give patients access to data and encouraging them to learn from what they see.
In other words, despite much earnest effort, it appears that the core PHR concept is dead. Long live its better-adapted successors.
Anne, while I agree that the concept of PHRs has not yet caught on, I believe it is far from dead. First, as you know there are many third party, “cloud-based” PHRs available, such as Microsoft HealthVault. However, I doubt that most people are even aware of solutions like this, not to mention the value that they can provide. Patients cannot be accepted to adopt PHRs on a mass scale without understanding them and recognizing their benefit. As with many new technologies, it is a challenge of education. Second, I agree that adoption could increase if data entry could be reduced. This is a challenge of technology but can be resolved. For example, my company offers a solution that can connect a provider’s EHR to a patient’s PHR, automating the data synchronization process. With this type of solution, if more patients utilized PHRs and kept them updated with any pertinent info outside of provider visits, updated health data could be made instantly available to any provider, anywhere.
This is the kind of situation where we would design a very different system if we had the utopian opportunity to start from scratch today. People would laugh at the idea of going to ten different doctors to put together a view of the patient. And patients would bristle at the fear that doctors would sell their data for marketing or even research purposes without patient consent. Moves to a more rational and human system will come from the edges: Quantified Selfers and reformers seeking a more rational delivery system for health care. Naturally the established providers are resisting it, but they will give way when its benefits become obvious.