Despite having the Twitter handle @DataHippie, you won’t find Chris Boone in a tie-dye T-shirt proclaiming the merits of free love.
Rather Boone is a data evangelist and patient advocate, who believes in the power of using data to transform people’s lives. The hippie part comes from his strong belief in the democratization of data for the public good. “You’ve got to put data back in the hands of the people so they can feel more empowered and reap the benefits associated with the use of their data,” says Boone, who is Vice President, Head of Real World Evidence at Pfizer based in New York.
Growing up in the low-income Oak Cliff neighborhood of Dallas, Boone watched his mom struggle with lupus in a substandard health care system. There was only one hospital to serve a community of some 200,000, he says. At first, he thought he’d become CEO of a health system “to change the whole paradigm in the city and make sure no person was left behind,” he says. You’ve got to put data back in the hands of the people so they can feel more empowered and reap the benefits associated with the use of their data.
You’ve got to put data back in the hands of the people so they can feel more empowered and reap the benefits associated with the use of their data.
But as he progressed in his early career, he realized he could make a bigger impact in the nascent data revolution. “I had come up as a technologist and a programmer in the early 2000s, but the emphasis at the time was not on data science because I don’t think the world had gotten that smart yet,” he says. But he saw the potential. “We were collecting and aggregating so much data, but the big question was how can we analyze this data and become smarter to better treat patients?”
Around the same time Boone also became interested in social determinants of health, such as access to nutritious food, good schools and safe parks. “We had a lot of data about direct doctor-to-patient interactions, but we knew nothing about what people were doing in their day-to-day lives,” says Boone, who served as CEO of the Health Data Consortium, a public-private partnership founded to improve access to health data. In this role, he became focused on gathering and using data to create holistic interventions that could improve overall health for people.
Boone brought his data background to Pfizer eight months ago in an effort to improve the use of real-world evidence and improve patients’ lives. Read on to learn more about how he is applying his unique approach to data and health.
Get Science: What does “data democratization” mean in the context of pharma and developing new medicines?
Boone: It’s asking, "How can we transform clinical research and make science more open?” Even within Pfizer, we work to make our science open to make the company smarter, eliminate redundancies, and build upon the great work that we’re already doing to be more effective in making treatment options available to patients.
Get Science: How are you applying your data expertise at Pfizer as lead on the “Real World Evidence” Team?
Boone: We’re focused on generating regulatory-grade evidence to support the approval of our medicines. And alongside approvals, we want to generate evidence so payers will cover and reimburse these medicines. And then you want to generate evidence so that patients and providers will understand the benefits and risks associated with using the medicines. So, it’s all about evidence generation around our medicines.
Get Science: How do you gather this evidence?
Boone: You can acquire data one of three ways: buy it directly from data aggregators, build individual tools that capture data directly from patients or providers, or partner with organizations, like patient advocacy organizations, so you can co-generate this type of data.
Get Science: With a growing interest in patient-centered drug development, there has been a stronger movement to use patient-reported outcomes and other tools to engage patients. Can you tell us about some of these?
Boone: When it comes to clinical research there’s an opportunity to engage patients in the study design, to get their input on what exactly they care about and what are the endpoints that are meaningful to them. Then, when it comes to the data collection piece, we want to be more innovative in passive data collection. An example of passive data collection is the kind of data we collect from wearables like fitness trackers., we want to have patients provide feedback on their experience with our products and medicines. A key piece in this is to create an appropriate ongoing communication channel with patients.
Get Science: Recent events raised public awareness of the potential misuse of consumer data. What can be done in the health space to increase public trust around use of their data?
Boone: There are several studies showing that patients are OK with donating their data as long as it’s for the public good, as an act of altruism. But if you think about all the instances where the public has been most disturbed, it’s where their data is being used politically or they found out companies are using their data without their knowledge or permission. People should be stewards of their personal data and feel empowered to obtain the benefits associated with the use of their data. The ultimate goal is to analyze the data to become smarter with it to better treat patients more globally.