I’m usually not nerdy enough to read a book titled “Social Physics: How Good Ideas Spread—The Lessons from a New Science” on an overnight flight to Paris, especially when there is an attractive film option (Muppets Most Wanted) at my fingertips. I was en route to the “Doctors 2.0 & You” conference—what I expected would be a complete high-tech geek-fest—and I wanted to better understand what MIT Professor Alex “Sandy” Pentland meant by “the New Deal on Data” before my arrival.
There’s something both ominous and exciting about the sound of a new deal on anything. New deal? Wait, I’m not sure I even know what the current deal is. If you studied U.S. history and the country’s social programs, you’re familiar with President Franklin Delano Roosevelt’s “New Deal.” The New Deal established a new relationship between the government and the public’s economic welfare. FDR entered into office in 1933, a few years into The Great Depression at a time when a quarter of the working population was unemployed. Many people were starving or hungry. The New Deal was a package of executive orders and legislation passed by Congress over several years to provide what some historians refer to as the three “Rs:” relief to the poor and unemployed, recovery of the economy, and reform of the financial system to avoid another depression. Features of the U.S. economy that we now take for granted—like Social Security and the Federal minimum wage—were created with the New Deal. Whatever your political stripes, you cannot deny that the New Deal radically changed U.S. citizens’ expectations of the Federal government: that it has a responsibility to safeguard our collective economic security.
But what is the New Deal on Data? In the same way that FDR’s New Deal was a fresh approach to government’s relationship with the public’s economic welfare, the New Deal on Data seeks to redefine the government’s relationship to the public’s privacy in the era of big data. It has been argued that FDR’s New Deal was a necessary response to the industrial revolution and the risks of modern capitalism. Today’s information revolution also brings risks along with awesome benefits. “Reality mining” of big data—“the digital bread crumbs of our daily experience”—can be used to improve everyone’s quality of life through innovation. Big data platforms allow us to conduct scientific research more efficiently and to predict trends large and small. While the information revolution greatly advances our capacity to understand many illnesses, including arthritis, the availability of so much information makes people vulnerable to embarrassment and exploitation. And that’s why there is a need for a New Deal on Data, a departure from the way things were before, in order to capitalize on the benefits while minimizing the risks.
Dr. Pentland has written elsewhere about this: “In short, to achieve the exciting possibilities of a data driven society, we require what I have called the New Deal on Data—workable guarantees that the data needed for public goods are readily available while, at the same time protecting the citizenry. Maintaining protection of personal privacy and freedom is critical to the success of any society.”
So there are essentially two imperatives of today’s data-driven New Deal. The first is that people be willing to share data into a collective so their information can be applied for everyone’s benefit. Information and ideas can be used collectively when they are shared collectively. The spread and combination of such information is what drives innovation and behavior change, according to Pentland. The second is that governments and other public entities take precautions to safeguard people’s freedom and privacy. At CreakyJoints, we have a role to play in both gathering information and protecting patients’ privacy. We take our role very seriously and are engaging a “Patient Governor Group”—a representative group of CreakyJoints members—to shape the direction of how our collective data about people living with arthritis are protected and used. There will be more to come about this soon, but let’s return to the Doctors 2.0 conference at Cité Universitaire in Paris.
Upon arriving at Doctors 2.0 (www.doctors20.com), I was struck by how diverse the attendees were in terms of health care function. Keep in mind that this was a conference on social media in healthcare. There were physicians and health researchers. There were entrepreneurs demonstrating new technologies and new social media tools for doctors and patients. There were representatives from the medical device and pharmaceutical industries. And there were professional patients and patient advocates, like us. There was even a self-described “health futurist,” an MD, PhD from Budapest named Bertalan “Berci” Mesko who created the Webicina.com website to aggregate and categorize social media and online resources by disease type. If you search “arthritis” at Webicina, you’ll see that CreakyJoints is at or near the top for Twitter and videos.
I was also struck by how effectively organizer Denise Silber, MBA, facilitated a conference that embodied key points from “Social Physics.” In his book, Pentland describes what is necessary for what he calls “exploration,” the use of social networks to harvest ideas and information. First, copying others’ successes (social learning) is far more effective than relying on individual information alone. Social learning is fundamental because increasing the reach and diversity of your network makes it more likely you’ll find successful strategies. The schedule and sessions at Doctors 2.0 allowed ample opportunity to meet others, exchange business cards, view others’ work, and share ideas in both formal and informal settings.
Second, diversity is important. To avoid hearing the same ideas over and over again, it’s important to figure out when everyone’s copying the same idea and to expand to hear new voices. Third, contrarians are important. Sometimes the best strategy is to take the contrarian view when it seems that everyone is moving in the same direction. Doctors 2.0 embraced diversity and created space for the contrarian perspective. This was due, in large part, to the fact that there was no arrogance from people with advanced degrees in technical subjects. Instead, each attendee was interested in what everyone else had to offer. Patients were considered experts based on their own disease experience and navigation of complicated health systems. Physicians and entrepreneurs were experts based on their research or development of new technologies and approaches. Dr. Silber encouraged interaction and immediate feedback throughout the sessions, including a massive overhead screen featuring the #doctors20 Twitter feed in real time. Attendees were generally supportive of each other, but there were also differences of opinion. Patients and advocates asked challenging questions. Some expressed skepticism about the willingness of pharmaceutical companies to adopt new technologies that would benefit patients. Others attendees were uncertain that physicians or patients’ would readily accept Google Glass in the clinic or operating room. (Who wants their doctor to walk in looking like The Terminator?)
As CreakyJoints becomes a leader in fostering the New Deal on Data, it’s important for us to be similarly adept at facilitating the cross-pollination and dissemination of ideas and information about arthritis research. Each of the CreakyJoints contributors and Patient Governors possesses wide-reaching networks and diverse perspectives. They will not agree with each other all of the time. But that’s what makes CreakyJoints patient-powered research such an exciting and powerful project. It’s good to be a nerd, or, at least, to include one or more in the discussion.