Shifting the Conversation About Sharing and Using Health Data

February 27, 2020
Maria Simeone

A breakdown between the desire for privacy and the value of transparency within healthcare digital advertising.

Maria Simeone, VP Marketing at PulsePoint

From conception until death, we worry about our health and wellbeing. Every civilization across the millennium shares this truth. But health is hard to define and treating illnesses is no easy feat. From Hippocrates to Houston Medical Center, healthcare professionals have dedicated their careers to helping others uncover the cause of ailments, answer uncertainties and providing treatment options with the same intent - to improve health outcomes. Our lives are multidimensional, our health is impacted by much more than just our bodies. So while doctors have valuable data points from the one on one relationship between HCP and patient, there are other contributing factors that go beyond the information we proactively share, that can improve health outcomes - our digital determinants of health. 

In an always on digital era, where we emit data signals each time we use a connected device, and are in turn bombarded with over 5000 messages a day, access to troves of information has become hotly contested. Is it mine, as the individual sharing breadcrumbs as the originator and intended target of marketers like myself, or does it belong to the app or device I use to enter personal health and fitness data to help my wellbeing? As next-generation connectivity continues to be interwoven in our everyday lives, the nations “tech angst” continues to rise, and is at a tipping point. The result of consumer unawareness has been a growing sense of fear to share health data, which could limit advances in healthcare from clinical research to cost reductions. 

What’s clear from conversations is that most still don’t understand the data ecosystem - how their information is being sold, traded, and shared and by whom. According to a recent study from the Pew Research Center, 81% of U.S. adults say they have very little or no control over the data that companies collect about them; 63% say they understand very little or nothing at all about the laws and regulations that are currently in place to protect their data privacy. 

It is critical for companies collecting data and their marketing teams to proactively address how individuals can share their data or not share their data - clearly highlight whether you would like to collect data and how your opt-in or opt-out permissions work. Healthcare companies and marketers can provide specific and clear examples on how health data is being used for a positive outcome and never stop emphasizing the anonymity factor of aggregated data. Most consumers are willing to share at least some type of health data if it is anonymous, including information about their diagnosis and treatment history, which has the potential to radically impact R&D. 

There are numerous examples of the good that sharing health data can do, in exchange for benefits, like tailored information, efficiencies and improved care - 23&Me collects DNA for clinical research in exchange for providing information on ancestry and genetic conditions. 

Where consumer skepticism often stems from is when we feel our data is being exploited for the singular benefit of someone else, with nothing of value in exchange. The binary view of “data is good” or “data is bad” is unrealistic and not the world we live in. So if we explain in clear terms how something meaningful is being done with information collected and creating a balanced system, and fair value exchange, we have the opportunity to self regulate our industry while maintaining consumer trust.

It’s more important than ever that the healthcare and tech industries help people understand how the digital data signals we share benefit us, and how they are actively protecting individuals from information security risks. I found this article to be a comprehensive resource on how data is collected and who uses it and encourage everyone to not be reluctant to dive into this. Healthcare in particular is trapped between a rock and a hard place, rationalizing the diverse set of regulations and standards into a single overarching security framework, while struggling to improve the consumer experience. Data collection isn’t one size fits all, so why should data transparency be?

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