“Give us our damn data!” It’s a common refrain from patients, who want access to their medical records. Many assume they are entitled to information so intensely personal, learning too late that obtaining them is … a process.
The errors, oversights and treatment delays caused by a lack of access are heartbreaking and spur rightful indignation.
The promise of electronic health records is to improve patient access and engagement in their care, and make health care safer, higher quality, more affordable and more efficient—all at the same time. There is broad agreement that making digital records work is critical to fixing health care. Federal “meaningful use” (subscription required) requirements are providing the carrots and sticks necessary to spur adoption and get electronic systems to talk to each other and to patients. Physicians and hospitals have been paid an estimated $12.3 billion since the program started in 2011. Those not meeting requirements will face penalties in 2015.
But are we thinking big enough?
What if we could completely change the center of health information gravity to the patient with a “Public Health Graph.” No, not more bar charts and lines drawn on x and y axis. Most of us encounter “graphs” multiple times a day. It’s how Netflix makes tailored movie recommendations based on our online preferences and habits. It’s how LinkedIn connects you to people you know and those you should know. It’s how Facebook serves up customized advertising. These graphs or map of connections not only allow companies to recommend just what we need, when we need it, but the patterns in our online purchases and activity help businesses develop better products and anticipate emerging trends. Why not do the same for health?
The explosion in personal fitness and other mobile health apps show signs of working against some of our most intractable public health challenges – taking medications on time, eating better, moving more. They have become a seamless part of our personal and online social life. Collectively they could add up to so much more.
Imagine patients not only accessing their own medical records, but adding data from their personal “Health Graph” of daily fitness, nutrition, sleep and stress information. Such information would make conversations with our doctors much more productive.
But the real power will come from connectivity to health care’s “big data” sets like the Environmental Protection Agency (EPA) and Center for Disease Control and Prevention’s (CDC) surveillance of things like air quality, the flu, obesity and HIV/AIDS rates in specific geographies. When this data becomes part of our “Public Health Graph” page view – presto, it is personally relevant. Suddenly, “Give me my damn data,” becomes “It is my damn data and I can use it for personal and public good.”
The energy building around more connected, personalized health care is truly exciting. In the past week alone, several initiatives are emerging to better personalize and connect health information. However, to date, no one has connected the personal to the public. Combining personal and public health data has the power to transform health care, creating powerful feedback loops to shape better health (not just care). We’ve already seen a correlation in Facebook likes and hospital quality.
Like retailers and marketers, public health officials can use the combined personal and public data across sectors to find and discover connections and patterns currently obscured by a balkanized system. For example, epidemiologists tracking a Pertussis outbreak can cross reference with immunization rates, antibiotics prescribed to stop contagion, alert area schools and recommend targeted Facebook informational ads to parents in hotspot locations.
The “Public Health Graph” would sit at the center connecting clinical, personal, social, and societal data, bridging the divides that keep us from being more informed or force us to search for information from website to website, app to app. The result will be a 360-degree, 24/7 view of our unique medical needs, past care history, plus the ability to learn more about how factors outside the doctor’s office impact health and do something about it.
Using the Robert Wood Johnson Foundation’s county health rankings released recently, parents, business leaders, public officials and others can make connections to a range of factors affecting health where they live including access to health care, healthy foods and recreational opportunities, unemployment, obesity, smoking, air quality, and premature death trends over the previous decade. Have a child with asthma? Consult your Health Graph’s air quality index, get tips from the Asthma and Allergy Foundation of America and connect with other parents. Want to protect your child from the vagaries of obesity? Connect with others and use the data to rally city hall to build more playgrounds and bike paths and eliminate food deserts.
Because it’s “your damn data,” the Public Health Graph would allow you to choose how you want it to be used. Share it with your doctor (or not). Donate it (with a mechanism to anonymize of course) to researchers and causes similar to the way those with cancer or other diseases currently share data from their tissue samples with research databases and access to clinical trials. Join communities of others who share your unique health goals.
Let’s not wait until 2020 to have another “meaningful use” requirement that encourages physicians to connect to their patients’ online Health Graph activity and changes the center of gravity to connect the host of public health data to patients in ways that are personally relevant and actionable.
There are obvious privacy issues to address and financial incentives that encourage the hoarding and siloing of data to overcome. But now is the time to prevent data silos before they start and take root. Haven’t we had enough interoperability hurdles?
In some countries (Australia, Israel, soon Sweden) people have full-fledged access to their medical records - also called "health account" akin to a bank account that can be accessed online instantly. This does seem more simple to accomplish in a country with universal healthcare, where collaboration and unity are more significant than market competition.
Great idea about the utilisation of the data for public health purposes.
The future is in sight with Blue Button Plus. This initiative, if it includes the proposed Open Registration requirements means that any patient can connect to any app once and these apps become the patient's agent even if the patient is asleep, etc. Patient-directed exchange is the future of Gimme My DAM Data.
Great article. I think that this is even bigger than just the personal. The ability of Data Scientists and Medical Researchers to do the Data Mining on this could lead to medical breathru after breakthru. Most medical studies have 10's or maybe 100's of participants. If we could properly protect the data (ie with suitable privacy protections and laws against discrimination against medical information about you) would mean statistical analyisis of billions of data samples across millions of people.
I wrote a bit about this at http://blog.ibd.com/how-the-world-works/data-wants-to-be-free-as-in-freedom/
@PanthTech I see that as complimentary - at best. We will always need clinical continuity of care. That's vastly different & needs an NPI