Question number 4 for our “20 Questions for Health IT” project. Please comment in the comments section or on twitter using the #20HIT tag. View the other questions and comments here.  

Question from Bernadette Keefe, MD:

How can an electronic health record (EHR) combine the formal record from clinicians with the patient’s ongoing chronicling of their health status?

Given nearly 99% of patients’ lives are spent outside encounters with the healthcare system, it is becoming obvious/imperative to capture patient health status beyond the notes/information in the official EHR. Patient education, engagement, and self-care are becoming cornerstones of effective healthcare delivery, especially given the chronic lifestyle diseases we face today.

Even if patients don’t have a lifestyle-type disease (Type 2 diabetes, high blood pressure, obesity, and others), they spend important time practicing self-care and directly experience the benefits and side effects of their medications and other treatments. Patients have new symptoms and others that disappear between doctor encounters that need to be captured.

It is imperative that this patient data be recorded in what I propose as a parallel “Patient/Personal Electronic Health Record” (PEHR). Such a record is not a Personal Health Record (PHR), which is generated by clinicians from healthcare encounters. It is also not Open Notes, which is sharing of the clinician record with patients. The PEHR data is completely patient generated and could become an immediate reservoir for all the fitness/healthcare app data generated daily. Additionally, patients would chronicle their response to treatment and medications.

A PEHR would be covered under HIPAA guidelines to protect the patient. PEHRs would be read/write for the patient, read only for specifically designated clinicians.

I’m concerned that if we wait for the readiness of the healthcare system, the technology, and the healthcare providers, many years of valuable patient information will have been lost; not to mention the record of the patients’ response to treatments. I like the concept of a separate record generated by the patient, in parallel to the EHR.

To the technology mavens and clinicians I ask: What is your opinion about PEHRs?

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