Data flows freely in the sharing economy. Today’s consumers can access and share data at the click of a button, and businesses – from banking to transportation to retail – can use that data to predict trends and improve the customer experience.
But how should data flow in healthcare, an industry that is traditionally siloed and in which privacy is a major concern?
Recently, experts from the public and private sectors gathered with Bloomberg Government and SAP to discuss the huge potential of predictive care in the age of Big Data.
The experts agree: Big Data is fundamental for turning precision medicine into reality. Patients must be empowered to access and share their data. Research institutions must be incentivized to collaborate. And the public and private sector must come together to create an environment in which data sharing is encouraged, yet secure.
Sharing your health data for the greater good
Leading the charge is the Precision Medicine Initiative, announced by President Obama last year. One million Americans will volunteer to have their genomes sequenced, share their medical histories, provide blood samples, and participate in future studies. Their health, lifestyle, and environmental data will be collected and analyzed to determine trends in disease diagnosis and treatment.
When that data is aggregated and analyzed, providers can better treat the individual, explained Dr. Francis Collins, director of the National Institutes of Health, who is leading the Precision Medicine Initiative.
But for precision medicine to succeed, the public must be willing to participate. Dr. David Shulkin of the Department of Veterans Affairs highlighted how his organization has 450,000 veterans offering up their health data in a precision medicine study. Similarly, Susan G. Koman has rallied 10,000 women to donate tissue samples for breast cancer research, said president and CEO Dr. Judith Salerno.
“We have to educate people, we have to make them understand that sharing their own data has benefit not only for them, but for their children, for future generations, and for developing new treatments,” said Dr. Salerno.
“It’s all about doing what the patient wants,” said Bray Patrick-Lake, director of patient engagement at Duke CTSA, part of the Translational Medicine Institute. That means a conversation at the time of consent to ensure patients feel ownership over their data, yet are empowered by the potential for future breakthroughs.
You can’t herd cats, but you can move their food
Researchers, pharmaceutical companies, and academic institutions also tend to protect proprietary data. But for personalized medicine to reach its full potential, these institutions must collaborate.
Dr. Collins likens the challenge to herding cats, requiring incentives for institutions to share data. With larger populations available for analysis, qualified researchers from around the world should be able to study trends and add insight into the health of each and every individual.
“This is about all of us,” said Dr. Collins.
The event was a lesson in partnership. Precision medicine will require a new social contract that promotes data sharing for the greater good – between patients and providers, public and private institutions, and the healthcare and tech industries. Together these cohorts will help find solutions to some of the biggest hurdles in healthcare, which include interoperability between systems, a data governance policy that protects privacy yet promotes sharing, and a payment model that promotes value-based care, said Dr. David Delaney, chief medical officer of SAP.
And the time to act is now. “The one thing that people who are living with disease don’t have is time, so we really have to speed things up,” said Patrick-Lake.
For more on how knowledge sharing is key across all industries, see Our Digital Planet: Collaborating For Success.