Want to Improve Health? Help People Use and Share Their Data
April 10, 2015
In 1823, a young French physician, Pierre Charles Alexandre Louis, published a controversial article urging doctors to compile, share, and study statistics about their patients. He said that by recognizing larger trends across a community, physicians could more effectively treat individual patients. One of Louis' findings, based on thousands of case histories and autopsies he conducted, was that the common practice of bloodletting was probably not a good idea.
Many of his colleagues initially disagreed, but it was hard to argue with Louis' numbers, and bloodletting soon fell out of favor. Meanwhile Louis' "numerical method," as he called it, expanded beyond specific treatment to include background information on patients – their ages, their jobs, where and how they lived – and laid the foundation for modern epidemiology and today's clinical trials.
Today an exponentially greater revolution in health information sharing is under way. New technology is offering everyone, not just health professionals, vastly more health-related data than we could have imagined even a few years ago. This new era of data, both big (populations) and small (individuals), offers remarkable opportunities to improve health, by helping to stop the twenty-first century equivalents to bloodletting – those unhealthy behaviors and unnecessary medical procedures that are draining our physical, mental, emotional, and economic well-being.
One of the most appealing aspects of the report is that it was based on listening – specifically, on a series of five "listening sessions" that the committee conducted across the country. Based on those sessions, the Data for Health Advisory Committee produced recommendations for specific ways that government, private business, nonprofits, and philanthropies can moved forward in helping people get, use, and share data to help us all stay healthy longer.
The "listening" behind the report's insights and ideas harkens back to Dr. Louis painstakingly interviewing patients for their medical histories, and reminds us that each bit of data represents a person. Every number is someone's father, mother, brother, sister, son, or daughter. Every number comes from a person who wants to make informed choices about their health, but often doesn't have the knowledge to do so.
I believe that, fundamentally, data is all about helping people find new opportunities to pursue optimal health and participate in their own care. That means promoting ways to get, use, and share information about themselves easily and securely.
We need new and better ways to empower people to provide health-related information about themselves without giving up their privacy or security. We should help people understand, through statistics, how they can be more responsible for themselves and their families, and more accountable to their communities.
To help people begin to use their data, we need more bridges between researchers, developers, investors, health care providers, data entrepreneurs, and patients. Apple's new ResearchKit, announced along with the new Apple watch, includes apps developed by Sage Bionetworks (with funding from RWJF) that allows people to easily and securely share their data with researchers, which should speed up medical knowledge and action. Perhaps the most important data bridges will be between people sharing information about themselves, not only from their FitBits and UPs but in person, in ways that will benefit not only their own health, but that of the people around them.
When teenagers in San Diego make sure their friends don't get sunburned, when retirees in Omaha prod each other to walk a couple of hills every day, when joggers trade tips about the best running trails – it's all about sharing information. That, in turn, will help to accomplish RWJF's own mission – to build a Culture of Health where every person can live the healthiest life possible, no matter where they live, learn, work, or play.
Risa Lavizzo-Mourey, MD, is president and CEO of the Robert Wood Johnson Foundation, the nation's largest foundation dedicated to improving health.