Data Sharing Knowledge Gaps Widespread Among Patients
A new survey has identified significant knowledge gaps among patients about the types of healthcare data collected and how they are shared, used, and protected.
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By - Only about half of respondents (52 percent) identified health information as part of the personal data collected and shared in clinical settings, indicating significant knowledge gaps among patients about healthcare data collection, use, and security.
The Health Care Data Sharing Survey, commissioned and published by Chicago-based clinical data management company Q-Centrix, was conducted in December 2021 with a sample size of 1,191 people.
Fifty-three percent of respondents were female, and 47 percent were male. Respondents fell into four age groups: 18-29 (21 percent), 30-44 (27 percent), 45-60 (29 percent), and over 60 (23 percent). Respondents were also split based on household income: $49,999 or less (41 percent), $50,000-$99,999 (34 percent), and $100,000 or more (25 percent).
When asked what types of personal data are collected and shared in clinical settings, 87 percent of respondents chose personal information, such as name, address, and phone number. Seventy-four percent chose demographic data, and 73 percent selected location tracking data. Sixty-eight percent responded that information about their interests was being collected. But, only 52 percent selected health information.
In addition, only 25 percent of respondents said they had discussed how their healthcare data is used, while 61 percent said they had not, and 14 percent were unsure.
When asked if they believe sharing healthcare data is important, 46 percent said yes, 22 percent said no, and 32 percent were unsure.
Though a large majority (87 percent) reported being very concerned or somewhat concerned about their personal data being shared, there was slightly less concern regarding how their health data was shared, with 35 percent feeling very concerned and 40 percent being somewhat concerned.
These patient concerns may translate to a hesitancy to share data for purposes other than improving their own healthcare. Some respondents said they were unsure about whether they’d be willing to share their de-identified healthcare data for clinical research (21 percent), to improve hospital services (22 percent), to improve other patients’ healthcare (22 percent), and to advance care equity and identify disparities (24 percent).
Between 14 to 24 percent of respondents stated that they would not be willing to share their data for the purposes listed above.
When asked if they were comfortable with their de-identified EMR/claims data being shared for patient care and research purposes, 50 percent of respondents said yes, but 25 percent said no. Another 25 percent said they were unsure. Thirty-three percent reported being unsure if the widespread use of healthcare data is beneficial in achieving equitable medical care.
Over half (51 percent) of respondents reported that they either didn’t believe or weren’t sure that the data recorded in their EMRs was accurate. Only 28 percent thought organizations were doing everything possible to ensure their health data was protected, while 37 percent said no, and 35 percent were unsure.
The healthcare industry’s growing reliance on clinical data and EHRs requires that patients are educated and empowered about data collection, sharing, and use, the report authors noted. Bridging knowledge gaps between health systems and patients has the potential to significantly improve care, medical research, and health equity.
