Whose Record is it Anyway?

When I was an intern at Cook County Hospital in Chicago, for each of our patients who didn’t make it, we house staff received a good mark on our academic record if the family consented to an autopsy. Autopsy rates were also taken into account when the medical training institution itself was up for re-accreditation.Comparing what the clinical doctors thought was wrong with a patient before they died to what the pathologist uncovered with scalpel and microscope in the post-mortem examination was considered critical for training physicians and for advancing medical science. There’s still nothing like seeing directly, for example, exactly the type of a tumor, its location and extent, to gain an understanding of the particular malignancy that claimed a particular patient’s life, as well to shed a bit more light onto that disease in general. The more corpses you examine the better you can understand the diseases they were afflicted by.The number of laboratory tests that can be done on blood, tissues, and secretions has multiplied many fold since I completed an internship in the mid-'70s. A panoply of newer imaging technologies—ultrasound, CT, MRI, PET—produce detailed 3-dimensional pictures of every nook and cranny in the body. Three-D imaging and sophisticated fiber-optic scopes are used extensively to grab samples of tissues that used to be obtainable only by a surgeon before death or a pathologist after.In other words, “autopsies ain’t what they used to be when I was training,” in the days before moveable type. Today we can know so much more about what’s going on inside a sick person while they’re still alive.Another big chunk of medical education has moved away from the morgue. Students still dissect cadavers in gross anatomy. They also do a large share of anatomy studying at a computer monitor, exploring and “dissecting” detailed 3-dimensional virtual anatomical models. The University of Colorado Center for Human Simulation is famous for its Visible Human Project, a high-resolution digital reconstruction of a human body, based on 27,000 images of frozen slices of a single cadaver, each slice about the thickness of a human hair.Medical science and education just don’t need as many corpses as they used to. So what is a person to do who wants to leave their body to science? There is a nascent movement that allows people to bequeath all their personal medical data—including numerical and textual data and imagery—to the institution of their choice. I’ve seen estimates that an individual’s total medical data collected over a lifetime comes to gigabits or even terabits. We still have a lot to learn about exploiting such rich veins of information.Where then do you obtain your complete medical record in order to give it away?Unfortunately, nowhere. Over the course of a lifetime, we leave a clump of personal data in every medical institution we come in contact with. If information pathways between the clumps once existed, many have likely disappeared with the passing of time, like the trail of breadcrumbs left by Hansel and Gretel as they lost themselves in the wood. A person’s data are distributed among information silos (medical records) that most of the time don’t even know of each other’s existence.

In the last installment of this blog, titled "Godzilla vs. Megalon, "I spoke of the barriers to effective sharing among institutions of the clinical data that they hold. Each place jealously guards what it knows about a patient, sharing the information only reluctantly: in part because of HIPAAnoia, (fear of getting crosswise with the government’s Health Information Portability and Accountability Act standards for being too lax in protecting patient confidentiality); in part to hang onto business; and in part, because one place’s electronic medical record doesn’t “talk” to the EMR of the place that requested it.Underlying all this mess is the question of whose record is it anyway? Does the information that my local hospital holds about me belong to it solely, as has traditionally been the case? Or is it mine too? This is not unlike the questions I have about what rights Facebook, Amazon and Google have to their volumes of my personal data. Since what they hold is about me, shouldn’t I have extensive rights and control?Wouldn’t I be better off if all of my medical records belonged to me, as well as to each institution that generated them? That way I could begin to accumulate my own personal, lifetime medical record. I wouldn’t have to actually store all those tons of data: not as a hard copy, not in my own hard drive nor in my real estate in the cloud. I’d only need a comprehensive set of electronic pointers that tell me where each bit of data resides, as well as a license for me or a designee to access that information freely.There is no doubt that it would be a daunting task to master the ins-and-outs of each of the systems that contain a piece of my medical record. With an outline and pointers, at least I’d be able to hook up any person or institution that has my information with anyone who needs it, including myself.The starting point is a simple index of who holds what data. Once the index is constructed the next step is to get unobstructed access to those data, as well as the power to grant access to others as I deem fit. Being able to see all my medical information would give me the means to review and amend the records, or at least to annotate them, so they paint a more accurate picture. Ultimately, I’d like to be able to piece together a coherent narrative of my total medical journey.I could bequeath to a scientific institution my data outline, pointers and all the data the pointers mark, stipulating that the organization’s researchers are free to dig through my data forever. Perhaps, by combining my data with that of many other people, alive or dead, my record could contribute a bit to a new understanding of how the human body works in health and disease.On my death, I plan to offer up any of my organs for transplant into anyone that could benefit. I would like to believe that, in the hands of researchers, my freely given medical data, accumulated over a lifetime, would bestow more to medical science than what is left of my shriveled-up pickled corpse would have provided to suffering students huddled around a dissecting table in a medical school anatomy lab.Start taking control of your personal medical information by understanding that your medical record belongs, first and foremost, to you. HIPAA agrees. Your history ought to be additive, continuous and correctible; not today’s piecemeal, often conflicting bits that are collected and jealously guarded by every clinician and institution that has cared for you. You want it to be your story. If not a smooth picture, at least a mosaic that presents a coherent whole.

March 11, 2020
 in the
Digital Healing
Written by
Marc Ringel, MD

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