Health data should be like a mountain stream, flowing in a single direction with a clear purpose: improving health and medical outcomes. Instead, it’s a complex puzzle that only data scientists and physicians can meaningfully put together and use.
When most people think of personal health data, they think about their medical records. These reside — usually unconnected — in the offices of primary care physicians and specialists, in imaging companies, hospitals, and elsewhere. These records contain information such as vital signs, prescriptions and allergies, illnesses and injuries, physicians’ notes, and more.
But health data represent so much more than that, since most “health” happens outside of medical care settings. It includes your personal circumstances, the choices you make, and the things you do. This includes information from apps that log your workouts. It’s information from your past, like trauma or adverse childhood events. It’s information about where you live, what you eat and drink, your education, salary, emotional and social history, and other things, all combining to provide the whole picture of your health.
With health data scattered across each facility and provider you’ve ever visited and across each app and wearable you’ve ever used, it’s impossible to see the full picture. But that is something that should be available to everyone.
State laws require providers to keep medical records for all patients. These laws are different from state to state, but they all explicitly or implicitly recognize the health care provider as the owner of the medical record.
For data from wearable technology to apps to text messaging, ownership is determined by the terms and conditions you agree to. The Apple Watch and Google Fitbit, for example, are both designed to give you access to key indicators of your health but their terms and conditions don’t give you ownership of your data — and users don’t know how their data are being used. This landscape is further complicated by the status of data under property law, which isn’t viewed as wholly “ownable.” And since current laws don’t view people as the owners of their personal data, health care and service providers treat data as under their ownership. And those data are lucrative.
Who controls your health data?
In the U.S. alone, companies spent more than $19 billion in 2018 acquiring and analyzing consumer data, according to the Interactive Advertising Bureau. While companies buy, sell, and use health data to make money, there is no transparency into who is using it, what they’re using it for, and whether or not they’re profiting from it. Electronic health records make it easy to build aggregate health care data that can be used to advance scientific and medical knowledge and improve public health, but without transparency and access to individual aggregated data, individuals have no say in whether their information is being used, or how.
To fix this harmful state of affairs, individuals need ownership rights over their health data. As patients, as designers and engineers, and as public health professionals living and breathing the problem, we’ve started an open source, grassroots effort — ownyourhealthdata.org — to push for patient data ownership.
A future we can trust
While the road toward having an Estonia-like open source health information and patient-owned data system in the U.S. will be a tough slog, new capabilities make it possible to combine data from different places to create a more complete picture of health and wellness.
With this information in one place, health is less a puzzle and more a picture, allowing people — or their health care providers — to more confidently see the path ahead.
Building this future starts with a data trust, a secure location for storing health data. A data trust is where an individual’s lifetime health data will live. Within the data trust, an automated patient data manager maintains the data. The data manager is responsible for collecting, protecting, and assuring the appropriate use of this information. Individuals use the patient data manager to control their health information if they want to, when they want or need it. The patient data manager is always in the background, at the ready when needed. (You can see how this works in our Own Your Health Data comic.)
The patient data manager can help you see your health record and visualize your health over time. Creating your own models can help you identify patterns in things like your cholesterol or blood sugar levels. This knowledge gives you the power to make better decisions and take control of your health story; and in doing so know how to best provide self-care and manage your health care costs.
You can choose to share — or withhold — some or all of your information with your providers, family members, caretakers, researchers, or marketers.
Owning a copy of your personal data does not change property law, medical record requirements, or hinder the advancement of science. But it does build health equity by giving everyone equal access to their lifetime medical data.
Data ownership gives each of us the keys to our health puzzle and insight into how our data is used outside medical appointments to further research, innovation, and better health care for all. It gives us the keys we need to care for ourselves and our loved ones, and to build health in our communities and our country at large. Data ownership unlocks the path to achieving our health and wellness potential.
Juhan Sonin is the director of GoInvo, a Boston-based digital design studio with expertise in health care design and system engineering, and lectures on design and engineering at MIT. Annie Lakey Becker is a public health professional and product manager based in Seattle. Kim Nipp is a designer, illustrator, and animator specializing in scientific visualization. An earlier version of this essay was published on the Own Your Health Data website.