My Body, My Records

Judy Stone, MD

Disclosures

June 02, 2021

It's really hard to be on the receiving end of medical care. I've been doing that a lot since the first of the year, having to be a fearsome advocate for myself, my husband, and my seriously ill aunt, for whom I have been the medical power of attorney. Being a watchdog when the stakes are so high has been draining.

I've been in practice since 1983 — in solo practice for 25 years and then working in a variety of settings as a locum tenens physician (aka "rent-a-doc").

Today it was my turn for care and, once again, I almost blew a gasket in my dealings with corporate medicine.

Every couple of years I go for a DEXA scan to monitor treatment for osteopenia. My last scheduled checkup was canceled because of COVID-19, like so many other elective procedures. The techs always show me my results at my visit because I've been a physician here for so long and so many know me. Today was different.

The intake process was very efficient and I was in a good mood, because unlike during last week's visit to the hospital, all the clerks and patients actually had masks over their noses. Spacing was good and I felt relatively safe.

I told the tech that I would like to see the printout of my results, as usual. She asked me to go to the waiting room and check back in a half hour. She never reappeared with it. Instead, a clerk brought me a slip of paper. The prominent logo at the top read "Superior Care - Surprisingly Close." Ha! The scribbled note said "loss of bone mineral density." Disappointing, but no great surprise at my age.

I told the clerk that the response was unsatisfactorily vague and that I wanted to know how much the values had changed — to put a number on it. I also asked for the graphic printout I have been accustomed to, being a more visual than numbers person. That was refused. I asked to speak with the radiologist. He reportedly refused.

That's when I became really furious. In my almost 40 years here, I have never had a radiologist refuse to review results (of me or my patients, even of outside x-ray films). What has happened to professional courtesy?

It's also a courtesy routinely extended to patients that enabled competing independent radiology practices to build their small empires and siphon patients away from the hospital.

When I moved here, we had two small hospitals, high atop opposing ridges. There was Memorial, a community hospital, and Sacred Heart, a Catholic hospital. They later merged into one new system. Recently that was taken over by an even larger system, as seems to be the trend.

Patient Rights

Can a patient access their records? What rights do they have?

Surprisingly, the answer is found under the cumbersome Health Insurance Portability and Accountability Act, specifically the HIPAA Privacy Rule, which was updated last year. Our hospital's patient portal site says, "You have access to your Lab and Radiology reports, blood bank reports, and discharge instructions from your hospital visit."

Curiously, and inexplicably, they add, "Reports that are not available in the patient portal include microbiology and pathology reports from the Lab, transcribed documents, drug test results, and results for tests for sexually transmitted infection/diseases." This is curious to me, in part because I have access to the patient portal at Nebraska Methodist, where my aunt was hospitalized. It includes labs, pathology, radiology reports, H&P, discharge summaries, and consultations.

Although the hospital's website says you can have anytime access to your medical records, that is clearly not the case.

Apparently, hospitals are allowed to charge fees for some access and to impose rules as to how the information must be requested.

HHS has a useful infographic for patients, "Your Health Information, Your Rights," here. There are also some introductory patient videos and tutorials.

Denouement

I sent a pointed email to the hospital expressing my dissatisfaction with their "customer service."

Tonight, the radiologist's report, without the graphic I requested, is available on the patient portal. They said I would have to request it from my physician, which probably would have taken several days. The report reads like an entry for the Journal of Irreproducible Results, so I have asked one of my friendly former colleagues to review it.

It's really hard living in a rural community with a corporate monopoly controlling your healthcare. Many people go out of town for care, if they can. That becomes more difficult as you age or become more ill and is near impossible if you are poor. Other than one Amtrak train every couple of days, we have no public transportation and are trapped here. The hospital here almost has a monopoly. It's a shame they act like it when they could easily be more patient-friendly.

Have you had similar encounters? How have you handled the problem?

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About Dr Judy Stone
Judy Stone, MD, is an infectious disease specialist and author of Resilience: One Family's Story of Hope and Triumph over Evil and Conducting Clinical Research: A Practical Guide.

She survived 25 years in solo practice in rural Cumberland, Maryland, and now works part-time. She especially loves writing about ethical issues and advocating for social justice. Follow her at drjudystone.com or on Twitter @drjudystone.

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