Our Big Hairy Problem: Lots of Health Data, But Little Wisdom

We’re great at collecting and processing large amounts of health information, but do a poor job of helping people make wise data-informed decisions. 

In his book, The Creative Destruction of Medicine: How the Digital Revolution Will Create Better Health Care, Dr. Eric Topol described the massive amounts of data humans produce each year this way:

“[Today] we are generating multiple zettabytes—each representing one trillion gigabytes—each year and will exceed thirty-five zettabytes by 2020, roughly equivalent to the amount of data on two hundred fifty billion DVDs.”

A growing portion of the massive amounts of data humankind generates is being collected from inside and outside the body. Everything from the food we eat to the DNA in tumor cells is being digitized, analyzed and shared.

Yet, collecting health data is easy. It’s much more difficult to turn this information into insights that will help people become wiser stewards of their own health and well-being. As I’ll discuss below, this is a big hairy problem — especially in the area of genetics. But before getting into this topic, I’d like to pause a moment to describe one vision for how data can be collected, analyzed and applied wisely, albeit from an unexpected source: the first (and best) installment of the Matrix movie trilogy.

Interlude: The Machines in the Matrix Are Evil, But Know How to Use Data Wisely

The Matrix is an interesting movie because it forces us to grapple with complex topics such as the true nature of reality and our love/hate relationship with technology.

In the Matrix, Morpheus explains that the machines enslaved mankind in order to use humans as a fuel source. Yet, this explanation makes little sense as there are much more efficient sources of energy such as geothermal or fusion.

It turns out that the humans as batteries concept wasn’t the Wachoskis' (the siblings who created the movie) original intent. Rather, they wanted to have Morpheus assert that machines were using human brains in order to access the computer processing power they needed to create the ultra-realistic virtual reality of the Matrix, maintain their civilization and solve other problems.

Think about what it would take to develop a virtual world realistic enough to fool humans:

• Incredible amounts of data about, physics (classical and quantum), biology, genetics and more
• The ability to visualize this data in convincing ways
• The capacity to wisely apply the tools of data collection and analysis to develop a realistic moment-by-moment simulation of life on Earth

On their own, the machines would be hard-pressed to generate the computing power required to produce and maintain the matrix on their own. The brain is essentially a powerful, complex and potentially quantum computer and tapping it makes perfect sense. Neil Gaiman, working off an early version of the Matrix script, applied these concepts elegantly in his short story Goliath.

We can learn a lot from the vision of data collection, analysis and application presented in the earliest versions of the Matrix movie. The most important lesson is that there’s a profound difference between simply collecting and analyzing data and using it with wisdom.

What the Debate Over Personal Genomic Testing Reveals About the Perils of Delivering Health Data, But Failing to Provide Wisdom

In some respects, the current debate over the scope and value of personal genetic testing perfectly illustrates why providing access to health data is not enough. Increasingly, we’re asking people to make life and death decisions based on the results of DNA analysis, but giving them few tools to understand how to use this information wisely.

Late last year, the personal genetic testing company 23andMe got into trouble with the U.S. Food and Drug Administration because it failed to work with the agency to seek approval for its genetic screening technology.

The FDA sent 23andMe a warning letter requesting the company stop marketing its genetic testing kits. The agency was particularly worried that people might make unwise health decisions based on potentially inaccurate, or unclear information provided via 23andMe’s service. The agency wrote:

“Some of the uses for which [23andMe’s personal genetic screening service] is intended are particularly concerning, such as assessments for [breast/ovarian cancer] genetic risk [for disease] and drug responses . . . because of the potential health consequences that could result from false positive or false negative assessments for high-risk indications such as these. For instance, if the BRCA-related risk assessment for breast or ovarian cancer [is inaccurate], it could lead a patient to undergo [unnecessary surgery, receive preventative chemotherapy or other potentially deadly medical procedures], or [fail to detect cancer]. Assessments for drug responses carry the risks that patients relying on such tests may begin to self-manage their treatments through dose changes or even abandon certain therapies depending on the outcome of the assessment . . . The risk of serious injury or death is known to be high when patients are either non-compliant or not properly dosed; . . .”

Some responded to the FDA’s letter by railing against the agency for being paternalistic and seeking to prevent people from accessing their health data. But, Alberto Gutierrez, the official who signed the FDA’s warning letter told Business Week “we don’t have an issue with people getting their own DNA data, we just have concerns with how it’s being interpreted.”

For Gutierrez it’s not about simply collecting and delivering the results of genetic tests, but giving people the tools to use what they learn wisely. Some doctors, genetic counselors and others have complained that people — armed with test results from 23andMe — have demanded a range of procedures and changes to their treatment that may not be warranted.

The personal genetic screening arena is not the only place where conversations about the gap between data acquisition and data wisdom are taking place. Some of these include:

• Quantified Self: Are app and device developers are thinking carefully enough about how to make data actionable rather than simply beautiful?
• Electronic Medical Records: We’re spending billions in the United States to bring medical data from the analog to digital world, but are EMRs simply being deployed to meet regulatory requirements or being used to help doctors deliver better care?

Humans have always been really good at advancing science and technology. And, the techno revolution in health is proceeding rapidly. The benefits of progress are legion. But, without parallel innovations that help people use the highly sophisticated health information technology can provide wisely, could we see progress result in more harm than good?

The gap between health data delivery and health wisdom represents a tremendous market opportunity for those willing and able to figure out how to make health information actionable. A few companies are jumping into the fray. It’s time for many others to do the same.

You Are Invited to Dive Deeper

If you’d like to explore other research and analysis related to the health data vs. wisdom gap, the personal genomics revolution and more, I encourage you to consider the following resources listed below.

• Book: ePatient 2015: 15 Surprising Trends Changing Health Care: This book focuses on issues such as the rise of personal genetic testing, the collection and appropriate use of health data and more - Click Here to Learn More
• Premium Report - Parental Personal Genetic Testing: Blessing or Pandora’s Box?: This report (subscription required to access) focuses on the ethical and moral issues associated with providing parents with deep genetic data about their unborn children and features original research looking at how parents vs. non-parents stack up in terms of accessing personal genetic testing technologies. Click Here to Read a Summary of This Report