Big Data, My Data

by Jane Sarasohn-Kahn

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"The routine operation of modern health care systems produces an abundance of electronically stored data on an ongoing basis," Sebastian Schneeweis writes in a recent New England Journal of Medicine Perspective.

Is this abundance of data a treasure trove for improving patient care and growing knowledge about effective treatments? Is that data trove a Pandora's black box that can be mined by obscure third parties to benefit for-profit companies without rewarding those whose data are said to be the new currency of the economy? That is, patients themselves?

In this emerging world of data analytics in health care, there's Big Data and there's My Data ("small data"). Who most benefits from the use of My Data may not actually be the consumer.

Big focus on Big Data. Several reports published in the first half of 2014 talk about the promise and perils of Big Data in health care. The Federal Trade Commission's study, titled "Data Brokers: A Call for Transparency and Accountability," analyzed the business practices of nine "data brokers," companies that buy and sell consumers' personal information from a broad array of sources. Data brokers sell consumers' information to buyers looking to use those data for marketing, managing financial risk or identifying people. There are health implications in all of these activities, and the use of such data generally is not covered by HIPAA. The report discusses the example of a data segment called "Smoker in Household," which a company selling a new air filter for the home could use to target-market to an individual who might seek such a product. On the downside, without the consumers' knowledge, the information could be used by a financial services company to identify the consumer as a bad health insurance risk.

"Big Data and Privacy: A Technological Perspective," a report from the President's Office of Science and Technology Policy, considers the growth of Big Data's role in helping inform new ways to treat diseases and presents two scenarios of the "near future" of health care. The first, on personalized medicine, recognizes that not all patients are alike or respond identically to treatments. Data collected from a large number of similar patients (such as digital images, genomic information and granular responses to clinical trials) can be mined to develop a treatment with an optimal outcome for the patients. In this case, patients may have provided their data based on the promise of anonymity but would like to be informed if a useful treatment has been found. In the second scenario, detecting symptoms via mobile devices, people wishing to detect early signs of Alzheimer's Disease in themselves use a mobile device connecting to a personal couch in the Internet cloud that supports and records activities of daily living: say, gait when walking, notes on conversations and physical navigation instructions. For both of these scenarios, the authors ask, "Can the information about individuals' health be sold, without additional consent, to third parties? What if this is a stated condition of use of the app? Should information go to the individual's personal physicians with their initial consent but not a subsequent confirmation?"

The World Privacy Foundation's report, titled "The Scoring of America: How Secret Consumer Scores Threaten Your Privacy and Your Future," describes the growing market for developing indices on consumer behavior, identifying over a dozen health-related scores. Health scores include the Affordable Care Act Individual Health Risk Score, the FICO Medication Adherence Score, various frailty scores, personal health scores (from WebMD and OneHealth, whose default sharing setting is based on the user's sharing setting with the RunKeeper mobile health app), Medicaid Resource Utilization Group Scores, the SF-36 survey on physical and mental health and complexity scores (such as the Aristotle score for congenital heart surgery). WPF presents a history of consumer scoring beginning with the FICO score for personal creditworthiness and recommends regulatory scrutiny on the new consumer scores for fairness, transparency and accessibility to consumers.

At the same time these three reports went to press, scores of news stories emerged discussing the Big Opportunities Big Data present. The June issue of CFO Magazine published a piece called "Big Data: Where the Money Is." InformationWeek published "Health Care Dives Into Big Data," Motley Fool wrote about "Big Data's Big Future in Health Care" and WIRED called "Cloud Computing, Big Data and Health Care" the "trifecta."

Well-timed on June 5, the Office of the National Coordinator for Health IT's Roadmap for Interoperability was detailed in a white paper, titled "Connecting Health and Care for the Nation: A 10-Year Vision to Achieve an Interoperable Health IT Infrastructure." The document envisions the long view for the U.S. health IT ecosystem enabling people to share and access health information, ensuring quality and safety in care delivery, managing population health, and leveraging Big Data and analytics. Notably, "Building Block #3" in this vision is ensuring privacy and security protections for health information. ONC will "support developers creating health tools for consumers to encourage responsible privacy and security practices and greater transparency about how they use personal health information." Looking forward, ONC notes the need for "scaling trust across communities."

Consumer trust: going, going, gone? In the stakeholder community of U.S. consumers, there is declining trust between people and the companies and government agencies with whom people deal. Only 47% of U.S. adults trust companies with whom they regularly do business to keep their personal information secure, according to a June 6 Gallup poll. Furthermore, 37% of people say this trust has decreased in the past year. Who's most trusted to keep information secure? Banks and credit card companies come in first place, trusted by 39% of people, and health insurance companies come in second, trusted by 26% of people. 

Trust is a basic requirement for health engagement. Health researchers need patients to share personal data to drive insights, knowledge and treatments back to the people who need them. PatientsLikeMe, the online social network, launched the Data for Good project to inspire people to share personal health information imploring people to "Donate your data for You. For Others. For Good." For 10 years, patients have been sharing personal health information on the PatientsLikeMe site, which has developed trusted relationships with more than 250,000 community members.

On the bright side, there is tremendous potential for My Data to join other peoples' data to drive better health for "Me" and for public health. On the darker side, there is also tremendous financial gain to be made by third-party data brokers to sell people's information in an opaque marketplace of which consumers have no knowledge. Individuals have the most to gain from the successful use of Big Data in health. But people also have a great deal to lose if that personal information is used against them unwittingly.

Deven McGraw, a law partner in the health care practice of Manatt, Phelps & Phillips, recently told a bipartisan policy forum on Big Data in health care, "If institutions don't have a way to connect and trust one another with respect to the data that they each have stewardship over, we won't have the environment that we need to improve health and health care." This is also true for individual consumers when it comes to privacy rights over personal health data.

Sarasohn-Kahn's report on consumer-generated data, health care, opportunities and challenges will be published by California HealthCare Foundation in July. CHCF publishes iHealthBeat.


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