We're all aware (on some level) that data is captured about us. Our phones, our credit cards and even our electronic health records (EHRs) are keeping tabs. And in one form or another “big data” has weaved its way into our lexicon. So much so, that a quick Google search of the phrase will take you to the song Dangerous by Big Data—a band that, despite its name, distrusts technology. Perhaps that song title sums up the feelings most folks have about big data.
Distrust and skepticism are major hurdles for researchers and biostatisticians hoping that we will share our personal data for the good of big data and the powerful healthcare analytics it could render. However, patients may not be as hesitant as it may seem.
A recent study conducted by Truven Health Analytics and NPR asked 3,000 people how they feel about sharing their electronic health records and other data with researchers, employers, insurers, and their own doctors. Many of those surveyed are willing to share some data…under the right circumstances, and those circumstances vary with the altruistic use of data, degree of anonymity, and the age of participants.
Altruistic Use of Big Data
67.6% of respondents are willing to share their healthcare data anonymously with researchers. Perhaps this willingness is rooted in altruism, or a sense of the greater good. We are all touched by illness and we'd like to think we can help find the next treatment, cure, or vaccine that will save lives… even if all we're doing is removing our name from some personal health data and sharing it with researchers. This sentiment has those in the field of big data doing a cheer.
Anonymity and Healthcare Analytics
However, the survey suggests we're less willing to share other sorts of data, even if it may impact our personal health. The survey posed this question…
Would you be willing to share your credit card purchase records and social media information with your healthcare providers such as doctors, hospitals and health insurers, if doing so would improve your overall health?
Only 22.1% responded yes.
“Your overall health” might be a bit too personal. Gone is the sense of altruism and present is the feeling that perhaps your care team or insurer is a little too involved in your personal choices and actions. The respondents suggest that we'll share data for the greater good, but perhaps not for our own good.
Now, there could be many ways to anonymize these data, and the survey questions did not mention those options. However, the reaction of these respondents indicates that this type of data may be too personal to share. A line has been drawn.
If we want to get more data for healthcare analytics, patients will need to be better educated on how their data is captured, stored, and applied. Only then might we see hesitation about sharing personal information decrease. For many, big data is a big black hole (or cloud) where hackers and researchers alike roam. We need to demonstrate that big data is a focused endeavor with reasonable security measures in place. For younger generations, the expectations about data capture and security is very different. They might be more willing to share data.
Age and Expectations of Privacy and Security
You may not be surprised to learn that respondents 65 or older said they were less likely to share their credit card or social media information with healthcare providers, hospitals, and insurers. Only 16.0% responded yes compared to 30.4% of respondents 35 or under.
However, don't be quick to assume that the respondents 35 or under have a great trust in technology, data storage, and big data. When asked if they had any privacy concerns regarding health records held by their physician, hospital, employer or health insurance the 35 or under group responded yes more frequently that those 65 or older.
When it comes to our relationship with data, it’s complicated. People will share data for specific reasons with certain expectations about who can identify and access their information. Yet, if it gets too personal, as in the case with purchasing or social media data, we tend to want more privacy.
All of these expectations will need to be balanced as we research programs that tap into the potential of big data and healthcare analytics.