By Sara Bienvenu

In the last two years, drug development, treatments and healthcare in general have made incredible strides, thanks to the industry better understanding and utilizing the value of patient healthcare data. More specifically, the clinical data that is collected by hospitals and health systems during every patient interaction is leading to rapid innovation.

Because of the critical insights that can be gained from patient health data, this clinical data is essential to closing gaps in care, working toward achieving health equity and better patient health outcomes.


As the role of clinical data becomes more prominent, so too does the relevance of patients’ knowledge of how healthcare data is being used. Understanding the value and potential of this data to better patient care and outcomes, Q-Centrix commissioned a survey to uncover patients’ attitudes and beliefs toward the sharing of their data and how education around it can be improved.

The overall findings revealed an opportunity to educate patients on the significance of their healthcare data, not only as it relates to their own health but the health of others.

The collection of healthcare data
Understandably, there was some concern around personal data being shared, with 41.7% revealing they were “very” concerned and then another 44.7% were “somewhat” concerned.

When it came to what personal data they think is collected and shared in general, most respondents (86.6%) thought of generic things like names, phone numbers and addresses that are common in marketing initiatives; about half (51.6%) thought that health information was collected and shared. This makes sense when considering that 60.6% of respondents had never discussed how their healthcare data is used.

While these answers highlight an overall lack of understanding surrounding the collection and sharing of healthcare data, they also present a great opportunity to educate patients on the power of sharing data.

Understanding healthcare data’s value
Healthcare data is essential to the direction of patient care; it is often used to support continuity of care and personalized healthcare. Nearly half of respondents (45.9%) agreed that the sharing of healthcare data was important.

Looking at specific situations where healthcare data may be shared, 70.8% of respondents were happy to share their de-identified data if it meant it would be used to improve their own healthcare. 61.7% said they would share it for the betterment of clinical research; 59.6% to improve hospital services; 56.7% to improve other patients’ healthcare and 52.3% said they would share the information to advance healthcare equity and identify disparities.

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