U.S. consumers want to understand how and why their personal health data is being used by organizations, and may change their data sharing behaviors if they believe the information is being used to improve health outcomes for themselves or others, according to recent survey from health data intelligence firm W2O.

Conducted in two 1,000-person waves in September 2019 and May 2020, the poll uncovered widespread confusion among respondents about what kinds of health organizations are collecting their information, and the majority (61%) said they believed they were not personally benefitting from companies that collect their health data.

Further, comfort with sharing personal data – whether health information, biometrics, device-collected data or online activity – was lowest among older consumers and those with less education, both groups that W2o noted could most benefit from data sharing.

Control over and understanding of those data was highly valued among the respondents. The ability to opt out of data sharing (44%) as well as the receipt of details of how the data is being used (41%) were both highly cited as factors that would increase respondents’ personal comfort with tech company-healthcare organization partnerships. Seventy percent of the respondents indicated that personal health data should either never be shared, or only shared with their permission.

The end goal of data sharing was a major component of individuals’ mindset. Just over 60% of the respondents said that they would be willing to share their personal data “so long as it was for the greater good,” which for many was the guidance of care decisions or treatment development. With that being said, the respondents more often believed their data was being collected for use in advertising and marketing than it was to directly affect care.

“An understanding of how health data would be used to improve outcomes is critical to encourage people to share their data and is a more effective approach to data sharing than paying the consumers for their health data,” the firm wrote in the report.

WHY IT MATTERS

From precision medicine and care management to drug discovery, organizations are using aggregated health data to drive new insights that can have a direct impact on the outcomes of individuals and populations. Whether large payers or digital health startups, groups hoping to employ individuals’ data for health benefits need to be cognizant of their concerns, and have a strategy for winning consumers over.

“This study is indicative of the need to continually gather the most valuable, data-driven insights to better inform strategies and solutions for improved health outcomes,” Kevin Johnson, group president and managing partner at W2O, said in a statement. “Understanding consumer attitudes and expectations is essential for organizations and leaders to adequately address such turbulent, transformative periods in the healthcare industry.”

THE LARGER TREND

The issue is particularly exacerbated in the context of COVID-19. Individuals, privacy experts and lawmakers have expressed concern over how new health services, such as COVID-19 information or contact-tracing apps, may be collecting user data with few protections.

These concerns were highlighted by W2O in a release accompanying the report, which highlighted growing concern among pre-COVID-19 and post-COVID-19 respondents regarding their ability to keep health data private.

“The COVID-19 pandemic and interventions such as contact tracing and related technology applications have created an urgent need for companies to provide greater clarity around how health data is used,” Dan Linton, global data privacy officer for W2O, said in a statement. “Consumers believe that their health data is private information and should be used to advance their health and public health in general. To achieve the advances possible to address COVID-19 and beyond, organizations must proactively consider and respond to these privacy concerns.”

Some of these concerns were echoed in a separate survey released this week by cybersecurity firm CynergisTek. In it, nearly half of a roughly 5,000-person sample said they would be unwilling to use telehealth services again should their health data be compromised as a result.