Open Health Data: How To Go for the Gold?

Jan 16, 2015, 1:25 PM, Posted by

In his new book, The Patient Will See You Now, Eric Topol, MD, invokes the famed Arabian folk tale One Thousand and One Nights, in which the poor woodcutter Ali Baba utters "Open Sesame" to unseal the cave where thieves have a treasure of gold coins. Topol asks "whether we, like Ali Baba, can breech the gate that keeps us from [health and health care] data, to a new world of openness and transparency."

It's worth remembering that, in the folk tale, Ali Baba does get rich — but after fighting over the gold, almost everybody else ends up dead.

So how do we ensure that the story of increasingly open health data has a more universally happy ending?

It won’t be easy, and Topol acknowledges the quandaries of dealing with the "gold" — the enormous flow of health data already under way.

Among the issues:

Collecting our data: What Topol calls the "Internet of Medical Things" is about to spin off more data than we can almost imagine. He cites projections of an estimated 50 billion connected devices globally by 2020, or about six to seven per person. Many will be gathering actionable health data about each of us. Yet as Topol notes, our collection of health data today is at best "helter skelter." We have as yet no agreement or plan for how we'll collect and organize far greater volumes of information in the future.

Making use of our data: Data alone isn't insight; we need to analyze data to produce that far more important outcome, such as by developing so-called predictive analytics. Topol notes that Denmark uses 15 years of data on its citizens to map out disease trajectories, and demonstrate that having one condition could "lead to another that was seemingly unrelated"—thus offering new insights into disease prevention. But today, only a fraction of the health data that is now being collected worldwide is being analyzed—perhaps as little as 5 percent, Topol says. In the U.S., we have no systematic plan for using our data, only a disconnected array of public and private efforts.

Who owns our data? Topol asserts that individuals must own their data, but at present, clinical and administrative health data is governed primarily by state law, and, in most states, "data ownership is not clearly defined," Yale Law School professor Barbara Evans points out. Although patients have rights to access their data, trying to assert individual property rights is likely to prove a minefield. Consider what could happen if millions of people refused to have even their anonymous genomic data analyzed by researchers in a federally funded study. The dataset the researchers would then have would be incomplete and statistically biased, and potentially useless for advancing science.

Privacy and security: You don’t have to be actor Jennifer Lawrence or a Sony Pictures exec to know it's getting harder to assure information privacy and security. Do we have a prayer of retaining privacy if we move to an era of "massive open online medicine (MOOM)", as Topol proposes? Even if we created such a "planetary database of everyone's de-identified [health data]," as Topol argues we should, de-identifying or "anonymizing" data wouldn’t necessarily amount to much protection. He notes that studies have shown that "with extensive genomic data from an individual, it may be possible to re-identify the person." So it's not farfetched to imagine some nefarious hackers determining who has major genetic defects and using that information to blackmail people—or worse.

Topol is such a data denizen that he already has his own genome sequence stored on his iPad, but even he ends up where the rest of us probably are on these issues: conflicted. "We want full access but we also demand complete security of our personal information," he writes. "To say 'it's complicated' is a gross understatement." He calls for new federal legislation that moves beyond existing laws to provide "critical balance for privacy protection while at the same time promoting medical research."

We'll clearly need that balance to avoid reliving another ancient tale¯not the one about Ali Baba, but the story of Pandora's Box.

Head Shot of Susan Dentzer

Susan Dentzer, Senior Policy Adviser at the Robert Wood Johnson Foundation, former Health Affairs Editor-in-Chief and Health Policy Analyst, The NewsHour with Jim Lehrer, is one of the nation's most respected health and health policy thought leaders and journalists. Read more of Susan’s posts.