Portals see high usage, while untethered PHRs may compromise safety

Whenever I get a pitch about personal health records, I immediately ask if the publicist has any evidence that people are using the product in question. I rarely get a response because I know that in most cases, there is no such evidence. The lone exception is a PHR that's "tethered" to a large health system's EMR.

Some such evidence surfaced this week, when the University of Texas M.D. Anderson Cancer Center in Houston reported that 57 percent of patients and a surprisingly strong 40 percent of outside referring physicians are using the center's year-old web portal. And using it often. According to Healthcare IT News, patients have been logging into the portal an average of 3.3 times a week--that's once every other day--and referring physicians are accessing M.D. Anderson patient records 2.8 times weekly.

Not surprisingly, M.D. Anderson has a home-grown EMR, ClinicStation, which includes a portal called myMDAnderson. There are two types of organizations that have seen wide acceptance of PHRs: those that built their own systems--Partners HealthCare System in Boston comes to mind--and customers of Epic Systems. The Cleveland Clinic, Kaiser Permanente, NorthShore University HealthSystem in Illinois, the University of Texas Medical Branch and Dean Health Care are among those that have had success Epic's myChart PHR. 

Why does this model work? Because the EMR automatically populates each patient's PHR, saving people from having to enter all of their own data. Think of personal financial software before online banking became widespread. Who was going to sit down and type the entire contents of a handwritten check register into a Quicken screen? Virtually nobody. But when users gained the ability to download bank statements directly into the software, sales took off.

That's why I am not surprised by the findings in a newly published paper in the Journal of the American Medical Informatics Association. The author, Dr. Donald Simborg, co-founder and board member of Health Level Seven International and a founding member of the American College of Medical Informatics, argues that "untethered" PHRs create "a form of unhealthy consumer populism" by disrupting physician workflow.

"At or before each encounter, the care provider reviews the patient record, whether on paper or electronic. With only 6 to 15 minutes allotted to each visit, this must be done quickly. If the care provider has an electronic system, there is usually some type of summary screen and the provider knows how to navigate quickly from this to the most recent interval information or other relevant information," Simborg writes. "Imagine now the patient handing the provider a printout [or transfer of an electronic copy in human readable format] from the patient's PHR at each encounter....Given current time pressures for brief visits, if this is an existing patient with prior encounters, most care providers simply would not take the time to review the PHR system records in addition to looking at their own records."

This can be partially remedied, according to Simborg, by interfacing the PHR with the EHR, but it can't solve a fundamental flaw. "There is a problem with consumer-controlled PHRs that will be difficult to overcome. That is the trust that the information has not been altered by the consumer after receipt from its original source," Simborg contends. "The insistence by some that consumers have the right to do whatever they please with their information, including altering physician-established diagnoses and changing certified laboratories' reported result values is a misguided attempt at empowerment. It is simply unnecessary and undermines the ability of the provider to consider the source."

Information in an untethered PHR actually becomes dangerous when clinical decision support is added to the equation.

"In the situation of a decision support program issuing such warnings purely within the PHR, with the medication list the patient has aggregated within the PHR [presumably without care provider review of the inputs or decision support output warnings], there is potential for harm," Simborg says. "Uncoupling these processes has the potential to induce patients to make independent decisions
regarding their medications [which, without provider input, might have adverse consequences for the patient] and to uncouple the information in the respective records."

Granted, this is just one person's opinion, not backed by hard, scientific evidence. But it's more than the proponents of untethered PHRs have brought forward. Any PHR could be useful in an emergency, but for a routine office visit or scheduled surgical procedure, I certainly see how the wrong kind of information could be harmful. - Neil