Emerging technologies are rapidly reinventing even the most humdrum aspects of our daily lives. With an Internet-connected device and a few keystrokes, we can purchase groceries, remotely adjust our thermostats, even drop in on a college lecture. But when it comes to our health care, innovation lags sorely behind. We drive across town to the doctor’s office for a checkup; many of us still fill prescriptions with a piece of paper; we recite our family history anew for each new provider we see.
The time has arrived to usher in a new era for medicine: a more democratic, data-based and transparent health care system that will make us healthier as individuals and as a society.
Innovators across the globe are reinventing health care in just these ways. Earlier this year, Discover teamed up with the Robert Wood Johnson Foundation and SciStarter to spotlight some of the most promising initiatives in grass-roots health reform in the series “Exploring a Culture of Health” on our blog Citizen Science Salon. These 13 projects span a wide range of approaches — some for medical professionals, some for patients, some for governments and nonprofits — but they share a common goal of uniting disparate people, through technology, to improve the way medical care is delivered in the U.S.
These projects encompass three major themes: informing patients, sharing data and transforming real-world systems. Let’s take a closer look at the various projects that are reshaping our nation’s culture of health.
Knowledge is power, and having more of it at your fingertips is fundamental to improving health. Although the Internet is awash with health tips, filtering the good from the bad is a challenge; you’re one Google search away from letting your mildest symptoms spiral into self-diagnosis of an incurable disease. Finding better ways to inform patients and the general public, then, is a key part of creating a healthier society.
One such project, Visualizing Health, aims to better convey medical information visually. Scientists from the University of Michigan worked with a team of graphic designers to create and test infographics to communicate health risks, such as high cholesterol levels or disease likelihood. They came up with a range of freely available visualization tools that users can tailor to the goal of their communication.
Another project blows the doors to medical school wide open. Khan Academy, a free online educational resource, addressed a shortage in online medical education tools by hosting an MCAT Video Competition
to gather educational tutorials for the notorious medical exam, and the winners were vetted by the American Association of Medical Colleges and posted online. But the courses aren’t just for doctors-in-training: Patients and caregivers can use these high-quality resources as a trusted source of free medical information, too.
Technology makes sharing possible on a scale like never before, and health care can benefit from that sharing in lots of ways. Scientists rely on data for medical studies, so sharing our personal health stats could go a long way toward advancing big research projects. On a smaller scale, sharing data with our doctors and caregivers can allow them to keep tabs on our health remotely. And, among health care professionals, sharing best practices can help good ideas spread.
Two projects aim to facilitate sharing from an untapped pool of experts: people who live with a disease every day. These web resources, called BRIDGE
and Open Humans
, allow patients to track their health data and connect with researchers to form virtual research teams. The data, collected through apps, online journals, surveys and even formal research studies, are stored on the sites and can be put to use by various research teams.
MakerNurse is another online platform for sharing, in this case among nurses in the field. For centuries nurses have been developing “hacks,” or workarounds, using items in the supply closet to meet the needs of patient care. An example is the tennis balls on the back feet of a walker. These innovations often go unnoticed, but MakerNurse — a project from MIT’s Little Devices Lab — is an online repository for nurses to share step-by-step accounts of their good ideas.
A different kind of project encourages sharing from young people who are in the early stages of a psychotic illness. The project, carried out by researchers at the Early Diagnosis and Preventive Treatment (EDAPT) clinic at the University of California, Davis, consists of an app that surveys users’ daily moods and medication adherence. Information on their movement and social activity, such as incoming and outgoing phone calls, is also gathered in the background. The data provide a finer-resolution picture of the patient’s mental health profile and help doctors build links between daily experiences and symptoms.
Another program in the works, called linkAges Connect, collects data from household utilities to help seniors live independently and safely. By tapping into smart meters, the system tracks when the lights go on and off, and when gas usage spikes (indicating, for instance, when a meal is being cooked). Tracking these patterns over time, doctors could spot changes that may reflect health issues, such as grandpa leaving the lights on all night, indicating that he may be suffering from insomnia. Caretakers could then be alerted to check in.
Finally, in any discussion of sharing data, privacy factors in. Sharing a vast amount of digital health data is a boon for doctors and researchers, but it’s also a nascent practice rife with uncertainty. Outlining ways to use these data ethically is the task of the Health Data Exploration project.
In fall 2013, the project surveyed individuals, researchers and companies to scope out the landscape of public health data. Privacy was a primary concern, but people also questioned who owned health data and how it could be shared. Analyzing an endless, real-time stream of personal health data would also require new statistical approaches to make sense of it all.
“We think pursuing personal health data research has tremendous potential to open a new window into the role of daily behavior on health,” says RWJF program officer Steve Downs. “Long term, we hope people will see the value of their data to help health research and understand how such research will provide insights into their own health.”
Information and technology are transformative forces, especially in medicine. When both are combined, amazing things can happen, transforming medicine on big and small scales alike.
One such transformative project is Flip the Clinic, an online hub for patients and doctors to exchange ideas, or flips, to reinvent the traditional model of a visit to the doctor’s office. Doctors, for example, pose questions like, “How do you redesign the clinic?” or “How do I show patients that I’m invested in their health?” Patients and doctors alike share their answers in the comments, with the hope that the dialogue will improve the experience of a clinic visit.
A second project brings technology and information together to distribute medication more efficiently. Each year, millions of dollars’ worth of leftover medication is wasted at hospitals, manufacturers and pharmacies. At the same time, nearly 25 percent of uninsured adults have not taken their medication as prescribed to save money, according to the Centers for Disease Control and Prevention. SIRUM, a California-based nonprofit, mediates the transfer of unused, unopened medication from donor organizations to institutes that serve low-income patients. The organization playfully calls itself the “Match.com of unused medicine.” SIRUM has expanded its network to 260 medicine donors in the past year.
Another pair of transformative programs prove that it takes a village to raise a child. Child First and Head Start-Trauma Smart take a community-driven approach to help youngsters overcome the effects of childhood trauma. Twenty-five percent of kids will experience a significantly traumatic incident before they are 4 years old, increasing their risk of developing mental and physical health issues later in life. The Head Start program uses the school environment to bring together the child’s caregivers to define, recognize and cope with stress and trauma. Child First, on the other hand, works to stabilize the family environment by making home visits to the families of at-risk children.
Finally, transformation is possible on a grand scale when whole communities are motivated to take part. In 2010, when Gem County found itself ranked last in Idaho for healthy behaviors in the County Health Rankings report, members of the community started a grass-roots movement to improve public health. They planted a community garden, provided public information sessions and became the first county in Idaho to ban smoking in public areas.
In recognition of stories such as this, RWJF created its Culture of Health Prize, which honors communities that have placed a priority on the health of their citizens. Every year, the organization accepts applications from U.S. communities implementing innovative programs to improve public health, and it was all made possible through shared information.
Every one of these projects is reinventing a small facet of medicine, but when viewed as a whole, they are changing the way we view health care. It was once sufficient to describe personal health as a doctor-to-patient dichotomy, but as we enter the age of digital medicine, we’re quickly learning that we can improve patient outcomes through strength in numbers. The opportunity to bring medicine into the digital age is now, and you can play a small but significant role in improving outcomes for generations to come.