There's an alternative to sharing notes with patients: Sharing them with ex-patients

Like a lot of today's patients, the only occasion I've enacted my right under HIPAA to review my medical records has been when I was ready to march them over to a new provider. All three times I have done this (perhaps health writers are harder to satisfy), the commentary I could decipher scrawled across nearly every page only reaffirmed my decision to leave the physician or practice.

In one situation in particular--following a poorly communicated test result during my second pregnancy that gets me hopping mad to this day--it wasn't anything that was written that got to me, as some physicians fear, but the volumes that were missing.

As a reference, according to an article about the OpenNotes project published in yesterday's Annals of Internal Medicine, visit notes should serve the following, among other, functions:

  • Remind doctors of their patients' unique characteristics and medical histories.
  • Outline musings about differential diagnoses and therapeutic strategies.
  • Inform others who participate in the patient's care.

To this physician, I was a new patient, delivered fresh from my old OB/GYN across the hall, who had that year given up delivering babies. I had been through the entire prenatal drill less than a year earlier, though, so neither of us were really expecting any curveballs with the second.

That is, until my early risk assessment for Down's Syndrome came back positive. As I ultimately learned from the offsite genetic counselor I had to wait two harrowing weeks to see, my results were just barely above the cutoff for what is considered positive. The actual risk that the baby (now a healthy two-year-old) had a chromosomal abnormality was less than one-third of 1 percent--comparable to the risk of harm coming from the amniocentesis I decided not to undergo.

In a grim reflection of our dissonance on the issue, the doctor's thin file I reclaimed into my possession shortly thereafter showed only one word at the bottom of the lab report: "Amnio?" And on the next page, covering the visit in which I returned from the genetic counselor both relieved and emotionally annihilated by the ordeal, during which the MD never once asked me how I was feeling about the situation, if I had any questions, if the genetic counselor was helpful, etc., or made any attempt to offer support or prepare me for what might happen, she summed it up simply with an underlined "refuses amnio."

There was nothing in this physician's curt remarks on paper that hadn't been just as hurtful or unhelpful in person. There were no surprises or secretly suspected diagnosis, nor any additional information to support doing an amniocentesis.

The point in telling this story--other than the myriad references for ways not to treat a patient--is that your wildly more appropriate notes probably won't surprise your patients either. If your patient is new, expanding your communication by sharing the file may help your relationship get off on solid ground. For established patients, it might just hold a key to retightening that bond that so many physicians say has suffered as of late.

According to the Annals piece, "Overall, the literature suggests that patient access to the medical record may improve patient-doctor communication, empower and educate patients, and foster adherence."

My advice: Better to let patients in on what you're thinking now, rather than to have them find out later, when they request their records to leave for another provider. - Deb