THCB

Lifetime Health Records For Patients?

flying cadeucii 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 a patient can sign up for the service (it’s free) and 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.

David Harlow practices health law in Boston and serves as counsel for Flow Health.

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Deborah_C_Peel_MDdanmunrombushkinJohan_Gorisleonardkish Recent comment authors
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Deborah_C_Peel_MD
Member

When will the healthcare industry look to computer science experts (like Sweeney and Pentland) for solutions that enable the benefits of IT without the harms? Current US HIT systems are designed for mass surveillance, create millions of hidden honeypots of 1000s or millions of individuals’ health information, and are not transparent or accountable. That’s not a sustainable business model. The US HIT system enables data commercialization, but prevents patients from obtaining their own data or having private secure communications with doctors. Current HIT destroys patient relationships with physicians—-quite a feat—the very relationship that is the basis of the Practice of… Read more »

Deborah_C_Peel_MD
Member

BOTH—-the only way health or any research across millions can be done is if individuals own personal data & researchers query it. See Louis D. Brandeis Privacy Award winner MIT’s Alex Pentland on the New Deal on Data: http://hd.media.mit.edu/wef_globalit.pdf

mbushkin
Member

David,

See below

danmunro
Member

Great quote :

“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.”

There’s strong motivation – and desire – to change all these crazy workflows – but I question the logic (or success) when we don’t change the incentives or (specific to healthcare) the liability.

mbushkin
Member

David,

See below.

David Harlow
Member

Merle — As you note, we have different visions. At the core of the Flow Health vision is the opportunity for improved care coordination and care delivery enabled by a patient-centered longitudinal health record, read/write accessible in real time by any authorized member of the patient’s care team.

mbushkin
Member

David, We—you, I, Leonard Kish, Eric Topol, ONC, HHS and most others—share the same objective/vision, namely, to have a patient’s complete medical record from all providers available at the point of care anytime, anywhere. Where we disagree and differ dramatically is on our priorities and how we can best achieve it. Our priorities and criteria couldn’t be simpler. First, are FOCUS and SPEED of implementation. Our immediate concern must be to improve the quality of care during the patient-provider encounter and we should not wait for a perfect solution when a good one is ready to go. We must stop… Read more »

Johan_Goris
Member

David, if subscription is free (and always will be) … what is the business plan? In Europe the patient-citizen-consumer has IP rights on his or her personal generated (health) data. But then, … data is one thing, quality data another. All stakeholders, patients included, can (hopefully) add quality and thus value … Think : connected Health Literacy, Intended use evidence & validation + their dissemination & promotion to the lay user, Usability of Apps & Devices, Lifeline data & measurement adherence, Datasets & context aggregation, Derived data, … Within Epposi.org (the patients included multistakeholder platform since 1994) we promote an… Read more »

David Harlow
Member

Johan — Thanks for sharing information about epposi.org. I would be interested to know how broadly it is being used by patients. The EU and US start with different legal frameworks for data sharing and use, but we certainly have shared goals. There are some organizations in the US that have developed granular consents for data sharing but I wonder what the uptake will be beyond small communities of highly engaged patients. The business model consists of delivering services needed by patients, providers and payors in the effective and efficient management of patient care. Providers and payors may contract for… Read more »

leonardkish
Member

David, you are correct that, in many day to day health circumstances none of us care about “data”, we care about decisions, and we want the best decisions that we or someone we hire can help make about these decisions. In a similar sense, we don’t care about the gas in our tank (or electrons in our battery), we care about what that fuel enables us to do, get where we want to go, and we need those electrons and that gas in an immediately accessible, or attached, vessel. The important aspect to the data is that it follows the… Read more »

leonardkish
Member

I’ll also add, it sure seems like when the data is on someone else’s servers, they always seem to keep pushing the edge of what they can do with the data, what rights they require. And if you, the “owner” of the data on said servers don’t agree to provide such rights?….. then what?

David Harlow
Member

Leonard — I think we agree that 1. Patients need unfettered access to their data. 2. Others have and/or need access to the some or all of the same data. 3. Patients need the ability to share their data with others. Leaving aside for the moment the question of whether there should be outright patient ownership of records (and whether legislative change would be required to change that paradigm) vs. recognizing that each player in this drama has a different bundle of rights in health information of an individual patient — where we differ is in which approach to take… Read more »

leonardkish
Member

Agreed: 1. Patients need unfettered access to their data. 2. Others have and/or need access to the some or all of the same data. 3. Patients need the ability to share their data with others. Peer to peer storage networks are not the same as private clouds, and you’re right, people won’t move because data, they’ll make decisions based on what they are enabled to do. I sense, however, that major current data holders will recognize that their data will be much more accessible, valuable and much cheaper to manage, and will experiment, and those experiments will grow. Folks won’t… Read more »

William Palmer MD
Member
William Palmer MD

I’m not sure what “ownership” means here when you have a test like an echocardiogram or a MRI that consists of dozens or hundreds of separate or video images that can only be interpretated by someone with years of training watching a fast moving semi-video. So the patient owns the record?… he can’t use it without hiring another radiologist or cardiologist. I don’t even know what format you could put these in. The same thing obtains with a complicated series of electrolytes tests or endocrine assays. And the other thing you should remember is that most docs, if they have… Read more »

David Harlow
Member

We are in agreement on the first point – ownership is a slippery concept in this context – and not too far apart on the second point: the goal of patient control of records is not elimination of all repeat exams but, rather, elimination of unnecessary ones, and ensuring the ready availability of historical exams and other health information so it may serve as a point of reference as needed.