Health knowledge must be like a mountain stream, flowing in a single route with a transparent objective: enhancing well being and medical outcomes. As a substitute, it’s a fancy puzzle that solely knowledge scientists and physicians can meaningfully put collectively and use.
When most individuals consider private well being knowledge, they give thought to their medical information. These reside — often unconnected — within the places of work of major care physicians and specialists, in imaging corporations, hospitals, and elsewhere. These information comprise data corresponding to very important indicators, prescriptions and allergic reactions, sicknesses and accidents, physicians’ notes, and extra.
However health data signify a lot greater than that, since most “well being” occurs exterior of medical care settings. It contains your private circumstances, the choices you make, and the things you do. This contains data from apps that log your exercises. It’s data out of your previous, like trauma or adverse childhood events. It’s details about where you live, what you eat and drink, your schooling, wage, emotional and social historical past, and other things, all combining to supply the entire image of your well being.
With well being knowledge scattered throughout every facility and supplier you’ve ever visited and throughout every app and wearable you’ve ever used, it’s unimaginable to see the complete image. However that’s one thing that must be accessible to everybody.
State laws require suppliers to maintain medical records for all sufferers. These laws are completely different from state to state, however all of them explicitly or implicitly acknowledge the well being care supplier because the proprietor of the medical report.
For knowledge from wearable technology to apps to textual content messaging, possession is set by the phrases and situations you conform to. The Apple Watch and Google Fitbit, for instance, are each designed to present you entry to key indicators of your well being however their phrases and situations don’t offer you possession of your knowledge — and customers don’t understand how their knowledge are getting used. This panorama is additional difficult by the standing of knowledge below property law, which isn’t seen as wholly “ownable.” And since present legal guidelines don’t view folks because the house owners of their private knowledge, health care and service providers deal with knowledge as below their possession. And people knowledge are profitable.
Who controls your well being knowledge?
Within the U.S. alone, corporations spent greater than $19 billion in 2018 buying and analyzing client knowledge, based on the Interactive Promoting Bureau. Whereas corporations purchase, promote, and use well being knowledge to earn a living, there isn’t a transparency into who’s utilizing it, what they’re utilizing it for, and whether or not or not they’re benefiting from it. Electronic health records make it simple to construct aggregate health care data that can be utilized to advance scientific and medical knowledge and improve public health, however with out transparency and entry to particular person aggregated knowledge, people don’t have any say in whether or not their data is getting used, or how.
To repair this dangerous state of affairs, people want possession rights over their well being knowledge. As sufferers, as designers and engineers, and as public well being professionals residing and respiratory the issue, we’ve began an open supply, grassroots effort — ownyourhealthdata.org — to push for affected person knowledge possession.
A future we will belief
Whereas the highway towards having an Estonia-like open supply well being data and patient-owned knowledge system within the U.S. shall be a tricky slog, new capabilities make it possible to mix knowledge from completely different locations to create a more complete picture of well being and wellness.
With this data in a single place, well being is much less a puzzle and extra an image, permitting folks — or their well being care suppliers — to extra confidently see the trail forward.
Building this future begins with a data trust, a secure location for storing well being knowledge. An information belief is the place a person’s lifetime well being knowledge will dwell. Throughout the knowledge belief, an automatic affected person knowledge supervisor maintains the information. The data manager is responsible for accumulating, defending, and assuring the suitable use of this data. People use the affected person knowledge supervisor to manage their well being data in the event that they wish to, when they need or want it. The affected person knowledge supervisor is at all times within the background, on the prepared when wanted. (You possibly can see how this works in our Own Your Health Data comic.)
The affected person knowledge supervisor will help you see your well being report and visualize your well being over time. Creating your individual fashions will help you determine patterns in issues like your ldl cholesterol or blood sugar ranges. This data offers you the facility to make higher selections and take management of your well being story; and in doing so know the best way to greatest present self-care and handle your health care costs.
You possibly can select to share — or withhold — some or all your data together with your suppliers, relations, caretakers, researchers, or entrepreneurs.
Proudly owning a duplicate of your private knowledge doesn’t change property legislation, medical report necessities, or hinder the development of science. Nevertheless it does construct well being fairness by giving everybody equal entry to their lifetime medical knowledge.
Information possession offers every of us the keys to our well being puzzle and perception into how our knowledge is used exterior medical appointments to additional analysis, innovation, and higher well being look after all. It offers us the keys we have to look after ourselves and our family members, and to construct well being in our communities and our nation at giant. Information possession unlocks the trail to attaining our well being and wellness potential.
Juhan Sonin is the director of GoInvo, a Boston-based digital design studio with experience in well being care design and system engineering, and lectures on design and engineering at MIT. Annie Lakey Becker is a public well being skilled and product supervisor based mostly in Seattle. Kim Nipp is a designer, illustrator, and animator specializing in scientific visualization. An earlier model of this essay was revealed on the Own Your Health Data website.