Consumers may not be knowledgeable about uses of patient health data

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Over the past few years, healthcare professionals have become increasingly concerned about how patient data is used and, just as importantly, how patients understand what those uses are.

However, if a new study is any indication, a minority of consumers understand the extent of shared health data, and many have only modest levels of concern about these uses of their health data.

The study, which was commissioned by Q-Centrix, surveyed 1,191 Americans in December last year to examine their attitudes and beliefs about sharing patient health data.

Overall, respondents seemed fairly knowledgeable about the business uses of other data collected about them. When asked what type of data is collected and shared, the majority of respondents’ datasets knew what data is typically used in marketing efforts, including personal information such as name, address and phone number. phone number (87%), demographic information (74%) and tracked location (73%). in contrast, just over 50% selected health information as a type of data collected at scale.

Given their limited understanding of the use of health data, it’s no surprise that they find the idea of ​​such misuse less of a concern than the misuse of non-clinical personal data.

On the one hand, 42% of respondents say they are very concerned (42%) or rather (45%) about the sharing of their personal data, but only 35% say they are very concerned about the way their health data is shared and 39% somewhat worried. In fact, 61% of survey respondents said they never discussed how their health data was used.

However, respondents expressed concerns about sharing anonymized health information for reasons unrelated to their own care. More than 20% said they were unsure if they were ready to share their anonymized health data for clinical research (21%), improve hospital services (22%), improve healthcare other patients (22%) and to advance equity of care and reduce disparities (24%).

Additionally, a quarter of respondents were unsure whether they would be comfortable sharing their anonymized EHR data or claims data for improved patient care.

To address patient concerns in this area, consumers will need to be confident that their clinical data is accurate and is being processed safely. As it stands, 35% of consumers responding to their survey said they don’t believe the data stored in their electronic medical records is accurate, and 35% aren’t convinced that healthcare organizations are doing everything what they can to ensure that their health data is protected.

Consumers also seemed to pay attention to which organizations might view their data. The survey found that 71% of respondents were only comfortable sharing their health data with providers, hospitals and pharmacies that had already treated them directly.

Clearly, it is essential that we keep consumers informed about the nature of the use of their health data and the implications this has for their wellbeing and privacy. If these survey responses are any indication, however, it seems we still have a ways to go before patients truly understand the extent to which their data is used or sought after by providers and commercial researchers.

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