PHR data exchange must become 'seamless and invisible'

While vendor after vendor and publicist after publicist keep contacting a certain FierceEMR editor about how their personal health records are going to revolutionize healthcare by empowering consumers, some people still keep their heads out of the clouds and somewhere close to reality. To the exclusive latter group we can add David Ellis, corporate director of planning and future studies at the Detroit Medical Center and publisher of Health Futures Digest, and Stephen J. Cavanagh, associate dean of the Wayne State University College of Nursing in Detroit.

"PHRs require considerable attention from the patient, do not talk to one another and are built on a shaky centralized foundation. To reach their true potential, PHRs must become largely invisible, communicate with each other, and remain a network of information stored in various locations," Ellis and Cavanagh write in the October issue of Hospitals & Health Networks.

And they continue to keep it real after that strong opening paragraph. "A central tenet of a 2006 [National Cancer Institute] report on PHR systems--that they will support wellness and understanding of health issues and will strengthen communication between providers--is largely untested," Ellis and Cavanagh say. "Even if it were tested and the hypothesis proved, it won't do much good if the PHR fails to become an everyday tool."

The authors go through a laundry list of current PHR shortcomings. For one thing, users often must enter their own data. "Information the patient supplies tends to be incomplete and unreliable," they say. Some PHRs, such as Microsoft's overhyped HealthVault, store data from patients and healthcare providers alike, but often in PDF files that are difficult to integrate into clinical databases like EMRs. "It is relatively easy to convert some [though not all] PDFs to text, but it is not trivial to have intelligent data-mining software figure out what the data elements mean and put them in the appropriate fields of the PHR," according to Ellis and Cavanagh.

They also note that PHR researcher Patricia Flatley Brennan favors patients inputting "observations of daily living" rather than basic demographic information and medical history because such diary-type information can help improve health status. "We're sure it does, but only for the few who can be bothered. Brennan says we need interactive apps, which certainly might help encourage patients to input observations, but we respectfully doubt that PHRs requiring such behavior will yield better health on a large scale." Ellis and Cavanagh say.

As we've suggested many times, the authors argue that PHRs won't really take off until data input and output becomes "seamless and invisible" from EMRs, smart medical devices, wearable sensors and smartphone apps.

"The effort required by patients to set up and maintain their PHRs seems analogous to the effort required to set up and maintain early personal computers with the Microsoft operating system (MS-DOS). Like the PC, the early PHR will attract the geek who enjoys tinkering and is up to a little programming, but in our opinion most people will not want to mess with it," the authors state. 

Similarly, they cite other denizens of the technology graveyard, including CompuServe, The Source, Prodigy and the original incarnation of America Online, as to why a centralized PHR likely won't work for many people. "These precursors to the then-nascent Internet all tried to preempt the Internet's distributed model with massive centralized mainframe computer systems through which every user would send and receive emails and look for information. All those multibillion-dollar companies more or less crashed and burned when Internet use exploded."

And the same is likely to happen when EMRs and health information exchange take off.

For more of this intriguing argument:
- read this Hospitals & Health Networks commentary