Patients and lifetime health records

Leonard Kish and Eric Topol recently argued eloquently for patient control of a lifetime health record, adding their voices to the calls for patient ownership of health records, building on the foundational notion that ownership is necessary in order to assert control because “possession is nine-tenths of the law.”

I certainly agree that patient control of data is of paramount importance, but I am not convinced that we need to take the leap to patient “ownership” of data, and I am not quite sure what that even means in this day and age — or how it really differs from the status quo. I’m less worried about the name we use for the bundle of rights a patient has with respect to his or her health data than I am about the vehicle available to exercise those rights. What has been missing is a platform that (a) empowers patients while (b) respecting the roles played in a patient’s health by all members of the patient’s care team and (c) recognizing the patient’s right to decide who’s on the team. More on that in a moment.

If we were looking at paper medical records in a general practitioner’s office, it would be a little easier to talk about ownership. We typically own physical things. In the physical world, the notion that possession is nine-tenths of the law makes sense. The traditional analysis of ownership in the paper medical records scenario is that the doctor owns the physical records – they are her business and professional records, they document her work. The patient also has rights, though: the right to access and copy the content of those records. A patient’s right to self-determination encompasses the right to have full information about one’s medical history and medical treatment.

At first blush, we might argue: When that which we would own is a collection of bits and bytes in the cloud, readable in multiple locations simultaneously, ownership and possession become less useful words to use. Upon reflection, however, it is clear that we can have ownership rights in the less concrete: one can own a patent or a copyright while millions possess – and, in fact, own — a better mousetrap or the Great American Novel. I see no reason to depart from this construct, which has worked well in the paper medical record environment. There is a bundle of rights held by an author that attach to a book, and there is a bundle of rights held by a reader that attach to a physical manifestation of that book. There is ownership or control of the physical and there is ownership or control of the not-physical. (An inadvertent commentary on this idea is embodied in the name of the company that holds the copyright to the music of my favorite post-bop-meets-Latin-and-Ethiopian big band leader and his band, Russ Gershon and the Either Orchestra: Ethereal Cereal. Yes, these rights are ethereal. But they exist.) License agreements, real estate easements, and any number of other arcane arrangements demonstrate that we humans are quite capable of slicing and dicing rights into little packages that make sense in a variety of circumstances.

In the context of health data, I do not think that any of us who are not clinicians, or who are clinicians but do not specialize in the disease we suffer from, or who are such specialists but who value the perspectives of other experts, really want to collect and maintain our health data on a flash drive or a personal cloud, or on an open-source sharing platform, to own and to hoard, and then parcel out access on an as-needed basis. (Consider the buzz around Diaspora, the open-source, self-hosted alternative to Facebook, a couple years back. Where are they now?)

And none of us wants to even think about our health data all that much – or at all, really – unless and until we are sick or injured, or a loved one is sick or injured . . . and then we want our data and we want it now!

While some of us might want to act as ever-vigilant gatekeepers for our health data, we as a society are not about to blow up the health care system as we know it. Our social contract involves health care providers of all stripes — and third party payors and benefits administrators (for most of us). We engage in workarounds that recognize that the world exists as it does (providers and payors are custodians of our records, just as banks hold our money for us), and that we have needs that must be accommodated (we can usually get the information we want out of those records as needed, and we can access our money via ATMs and our smartphones). It would be impossible to catalogue all of the workarounds that exist in our crazy, mixed-up world; it would be nice to minimize the number that we have to employ, but we should all acknowledge that we will never be able to eliminate all of them.

Let’s get back to patient control of data. We at Flow Health have built The Operating System for Value-Based Care, which is a patient-centered platform for lifetime health records. That means that when a patient signs up through a provider we will go out and get all of that patient’s medical records, wherever they may be, and integrate them into a “single source of truth” that is then accessible to the patient, and to all members of the patient’s care team. The patient can add providers, family members, caregivers to the circle of trust, and can eliminate access as well. (“I haven’t seen that specialist in three years.” “I’m no longer speaking with my daughter.”) When the care team has full access to the longitudinal health record — the “single source of truth” — good things start happening: meaningful care coordination, elimination of duplicative studies and scans, configurable alerts from hospitals to PCPs around transitions of care. Good things get built to plug into this universal patient data layer through an open API. Smartphone apps that help collect data from the 99% of the time that a patient is not in the doctor’s office can be connected — on the patient’s say-so — to the social-media-like “feed” of the patient’s records, and the data can be delivered in meaningful bite-sized pieces to the clinicians who need to see them and understand them in order to manage patient care in a value-based care system.

Do I want to own my data? I want to control my data.

I want to own my car. A friend of mine prefers to lease his. He still has the freedom to hop in the car and head up to the mountains for the weekend.

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