Why Improving Data Literacy Is Essential

I’ve long believed that communication is central to health and wellness. 

After all, if a newly diagnosed patient does not understand the benefits versus the risks of a medication, they are less likely to take it for the first time. Or, if a doctor’s instructions are unclear, bad things can happen. 

Given this, I’ve often wondered why health organizations, innovators, researchers and others don’t spend more time explaining the implications of significant technological advances to the public, policymakers and others. Clear communication, early and often, could prevent, or reduce many problems. 

For example, would 23andMe have fared better in the health marketplace if they had clearly explained to regulators and the public the benefits — and limitations — of personal genetic testing in terms of determining disease risk? Perhaps. 

Over the past year and a half I have written a number of articles for Marketing:Health focusing on the emerging health data gold rush. Why? Because I believe data has unlimited potential to benefit health, medicine and wellness. 



Yet, just like any tool or technology, health data has its drawbacks. In a new report, which was supported by the California Healthcare Foundation, noted health economist Jane Sarasohn-Kahn focused on the pros and cons of health data analysis and collection. In the report, Sarasohn-Kahn observes that “most people are unaware that they are leaving their personal data behind and that some of this information is not protected by HIPAA. Data brokers are able to build dossiers on individuals to sell to marketers, while consumers lack recourse to obtain or correct their information.”

Another issue associated with health data is security. Earlier this month, Dr. Robert Wah, president of the American Medical Association, warned that “criminal elements” are incredibly sophisticated” and that “health data stewards are . . . already behind in the race.”

Imagine this scenario: A large health data broker’s records are hacked. Millions of people around the world discover that their personal medical information is not only for sale, but is published online, and being used for criminal purposes. Policymakers panic, hold hearings and pass laws greatly restricting the collection, analysis and sharing of health data. 

Google CEO Larry Page recently suggested that having a tool that allowed doctors and researchers to easily search for medical records could save “10,000 lives in the first year.” Google, which will never become a health company, is nevertheless very interested in mining, analyzing and sharing health data, along with other firms such as Apple and Samsung. Yet, as Page noted, the regulatory burden associated with data collection and sharing is very high and could stifle innovation. If there’s a health data panic, the situation may only get worse. 

The issues surrounding health data collection, analysis and sharing are complex and important. Despite this, we’ve done a poor job helping people become health data literate. In fact, I believe health data literacy is so important to innovation that embarking on a global effort to educate key stakeholders (the public, policymakers, etc.) on the pros, cons and future of health data is essential. Doing so will help ensure: 

  • Laws and regulations are developed that protect privacy, but don’t stifle innovation
  • The public understands the types of health data organizations are collecting, how it is being used and what they can do to correct inaccurate information (imagine, for example, giving people access to a health data report that they can amend, just like we currently do for personal credit)
  • We understand the threats to health data security and how to proactively address them

Dear marketer: Do you care about health data? Do you believe health data literacy is important? If so, how do you believe we can improve the current situation? 

If you’d like to access more of my commentary on this topic, please click here to view the first episode of a new video blog series I’ve launched called Digital Health Illustrated. The first episode focuses on health data.

Next story loading loading..