It was one of those late night reading sessions that kept me going till the sun came up. I had taken a nap earlier in the evening, so I was fully awake all through the night. Anyway, I had printed out these articles concerning the electronic health record, mostly about PHRs, published in the April 17 issue of the New England Journal of Medicine.
Here's a brief summary of each, but each is worth talking about to a greater extent in future blog posts.
In the Perspective section of the NEJM, there are two articles, the first "Personally Controlled Online Health Data--The Next Big Thing in Medical Care?" looks at the use of EHRs as they will be implemented by private companies such as Google and Microsoft, and those companies allied with the non-profit consortium called Dossia.
Dossia (www.dossia.org), founded by AT&T, Intel, Wal-Mart, and five other large U.S. employers, plans to offer a voluntary means of storing personally controlled health data to about 2 million employees and 5 million dependents and retirees, as well as making other services available. The platform uses an open-source technology, Indivo, developed at Children's Hospital Boston. Dossia's long-term goal is a portable and secure lifelong record that will be available regardless of a person's employer, insurance plan, or physician; employees who leave a participating organization will still be able to use the system, possibly for a fee. Pilot testing is ongoing.
Mention is made of how these companies' efforts to store online data outside of the health care system are not subject to HIPAA regs. "Dossia, Google Health, and Microsoft HealthVault are not covered entities, the data they store may not be as private as consumers assume, and a person's 'control' could turn out to be limited."
The second Perspective piece, "Off the Record--Avoiding the Pitfalls of Going Electronic" voices some concerns I've been thinking about, that is, there are certain aspects of the electronic that be its very nature tends to lessens the value of clinical information it contains.
The ability to cut and paste previous entries or the use of check boxes or dumping lab data into the record, all produce volume but with little analysis leading to a "Where's Waldo" effect of trying to find a useful appraisal of the patient's condition.
This is what happens when non-clinicians think that any medical record is similar and is as easily created and maintained as banking records.
"Tectonic Shifts in the Health Information Economy" is the first of two articles in the Sounding Board section. It looks at the use of personally controlled health records (PCHRs) for clinical research.
The authors see the while the use of PCHRs "is driven largely by a need to provide assistance with clinical care processes, it will also profoundly affect the biomedical research enterprise."
They see five hurtles that need to be overcome for their in research to be fully implemented:
1. standard data formats
2. hospitals and doctors' practices need to make data available electronically to patients
3. CLIA labs must be allowed to release results to patients
4. structured data must available for analysis and computation, ie, the paper-based records be converted
5. since there is not universal patient identifier in place, new approaches to establishing ID and trust are needed
"Electronic Health Records, Medical Research, and the Tower of Babel" makes the case for the adoption of the standards needed such as a data language in the form of HL7, and clinical research data as envisioned by CDISC.
They mentioned the FDA's Critical Path Initiative for establishing a standard for the collection of research data. Also the Clinical Data Acquisition Standards Harmonization is working towards this goal.
