Alex Howard asserts that, in the optimal scenario, giving people access to their own health records is one of the best applications of data for the public good.
If, as a 2011 report from the World Economic Forum (PDF) put it, personal data is a new asset class, it's not one that has received a great deal of attention from your local newspaper, banker, principal, or doctor. There are changes afoot in multiple sectors that are starting to give consumers and patients more access to their own data, which means that both those entrusted with its stewardship and those who want it would benefit from paying attention to this trend.
As people gain access to their own data from hospitals, banks, energy companies, schools, and technology companies, it stands to drive market transparency and empower consumers. In the optimal scenario, giving people access to their own data—or data about them, like a credit report—is one of the best applications of data for the public good. From a veteran suffering from PTSD who needs access to his personal health record at a clinic to a student who needs to download her tax transcript online to apply for loans to a family that wants to track their home energy usage, personal data can enable people to gain more understanding about their lives and act to improve them if it is disclosed to them in machine-readable forms.
"We've developed new tools—called 'smart disclosures'—so that the data we make public can help people make health care choices, help small businesses innovate, and help scientists achieve new breakthroughs," said President Barack Obama, in September 2011. "We've been promoting greater disclosure of government information, empowering citizens with new ways to participate in their democracy. ...We are releasing more data in usable forms on health and safety and the environment, because information is power, and helping people make informed decisions and entrepreneurs turn data into new products, they create new jobs."
For that vision to happen, a majority of the stakeholders in a given industry sector have to agree on a standard, a process that can be fraught with technical, political, and commercial weight. Interoperable, open standards can be quite good for consumers, since such standards enable them to use their records or data in multiple places, but businesses have an incentive to use proprietary standards that keep them using their own service.
After years of effort, once such effort is maturing. As I told the host of "Government Matters" in Washington last month, the adoption by major pharmacies and healthcare providers may lead the "Blue Button" to scale nation-wide.
The Blue Button is a metaphor, symbol, and vision for healthcare in the 21st century. What began in 2010 as an effort to provide veterans more digital access to health records expanded into a collaborative effort by the White House and the U.S. Department of Health and Human Services to enable any consumer to view, download, and share their personal health data from those who hold it.
Extending access to a downloadable personal health record for veterans, then all of the military, and now millions of Americans has been an important, steadily shift that has largely gone unappreciated. There have been bumps and bruises along with the way, from issues with the standard to concerns about lost devices, but news of adoption by CVS and other pharmacies suggests the Blue Button is about to go mainstream in a big way.
To a physician like Dr. Bettina Experton, M.D., M.P.H, the Blue Button is revolutionary.
"There are $200 billion dollars wasted annually in this area," she told me, in an interview last year. "On average, one beneficiary sees seven different healthcare providers every year. Blue Button replaces 'line of credit' models with an ATM model with access and the ability to correct anywhere."
To the CEO of Humetrix, a healthcare information technology company—her other hat—it has immense potential, with a potential market reaches into the tens of millions of consumers. Humetrix introduced the 5th version of its "iBlueButton" smartphone and tablet application at the 2014 conference of the Healthcare Information and Management System Society, providing both caregivers and patients more robust access and management of their personal health data.
"Most vocal users are caregivers," she said. "iBlueButton enables them and patients to transfer a record directly from a smartphone to the doctor's iPad app using a QR code. This solves a critical issue: interoperability, along with enhanced patient safety and cost reductions. It creates critical clinical information needed at point of care."
Blue Button is one of those public-private initiatives that has taken years to take fruit that stands to substantially improve the lives of so many people. It started with something simple and built from there, iteratively, with a huge boost from the work of Presidential Innovation Fellows, which have improved developer resources (BlueButtonPlus) and now stood up an open API, at Blue Button Connector, one of the features that Dr. Experton wanted when we spoke.
As I've said before, data standards are the railway gauges of the 21st century. When they're agreed upon and built out, remarkable things can happen. Look for potential advances in personal data disclosures around education, consumer finance, and energy data next.
That's not to say that criticism doesn't exist, with respect to how commercial incentives could shift consumer behavior.
Evgeny Morozov, author and a senior fellow at The New Republic, raised concerns about potential costs to consumers this winter in a column in The Financial Times, railing against the inefficacy of policy, laws, or regulations to counter data sharing.
"...what good are these steps to counter the much more disturbing trend whereby our personal information - rather than money - becomes the chief way in which we pay for services - and soon, perhaps, everyday objects - that we use? No laws and tools will protect citizens who, inspired by the empowerment fairy tales of Silicon Valley, are rushing to become data entrepreneurs, always on the lookout for new, quicker, more profitable ways to monetise their own data - be it information about their shopping or copies of their genome. These citizens want tools for disclosing their data, not guarding it. Now that every piece of data, no matter how trivial, is also an asset in disguise, they just need to find the right buyer."
It's not clear whether Morozov's assertion regarding consumer interest in tools to protect their personal data is entirely accurate. At the beginning of 2014, the fallout from the widely reported leaks from Edward Snowden and massive data breaches at Target and other retailers has led an increasing number of people to seek out more secure, private online tools. The recent trend in apps like Whisper, Secret, Confide, WUT, and Banter that promise anonymous communication also suggest that people would like protection. If tools to download personal data or protect it are too difficult to use, consumers won't opt for them, but we could see a shift in the market for online privacy that looked broken a year ago.
Morozov's concerns about personal data used as a currency for commercial gain are more grounded by an economic argument: if consumers can receive a break on a given service by sharing their data, they may well opt-in to do so. For instance, data monitoring can save people money on car insurance, but some will pay more as a result.
What's crucial to recognize is that insurers and other services already have a great deal of data about consumers through data brokers. The status quo is an asynchrony of access and information between government and commercial entities. My view is that citizens and consumers alike deserve to know what the government and corporations know about them. Such rights have already been supported by law in the 20th century, in access to an FBI file or credit bureau report. In this century, We the People will need our Bill of Rights to apply online, enabling us to learn what data is being collected about us, by whom, and to opt-in or opt-out of such collection and uses. As I've argued elsewhere, if consumers have access to credit reports and can request the bureaus that maintain them to fix mistakes, such rights should be extended to data brokers and other entities that hold user data.
Both the privacy framework published by the Federal Trade Commission and the consumer privacy bill of rights from the White House include the principle of transparency, though it still will fall to Congress to enact either into law.