Consumers May Not Be Well Informed About Uses Of Patient Health Data

Over the last several years, concern has grown among healthcare professionals over the ways patient data is being used, and just as importantly, how well patients understand what those uses are.

However, if a new study is any indication, a minority of consumers understand the extent of the health data being shared, 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 during December of last year to look at their attitude and beliefs around the sharing of patient health data.

On the whole, the respondents seemed fairly well informed about commercial uses of other data gathered about them. when asked what type of data is collected and shared, the majority of respondents datasets knew what data was typically used in marketing efforts, including personal information such as name, address and phone number (87%), demographic information (74%) and location tracking (73%). in contrast, just over 50% selected health information as a type of data being collected far and wide.

Given their limited understanding of health data use, it’s not surprising they find the idea of such being misused less concerning than they do misuse of non-clinical personal data.

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

The respondents did express concerns about sharing de-identified health information for reasons not related to their own care, however. More than 20% said they weren’t sure whether they would be prepared to share their de-identified healthcare data for clinical research (21%), improve hospital services (22%), improve other patients’ healthcare (22%) and advance care equity and reduce disparities (24%).

What’s more, a quarter of respondents weren’t sure they were comfortable with their de-identified EHR data or claims data being shared for patient care improvement.

To address patient worries in this area, consumers will need to be convinced that their clinical data is accurate and is being handled safely and securely. As things stand, 35% of those consumers taking their survey said they didn’t believe the data recorded in their electronic medical records is accurate, and 35% aren’t confident healthcare organizations are doing everything they can to be sure that their health data is protected.

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

Clearly, it’s critical that we keep consumers informed about the nature of how their health data is being used and what implications that has for their well-being and privacy. If these survey responses are any indication, however, it seems we have a ways to go before patients truly understand the extent to which their data is being used or sought after by providers and commercial researchers.

About the author

Anne Zieger

Anne Zieger is a healthcare journalist who has written about the industry for 30 years. Her work has appeared in all of the leading healthcare industry publications, and she's served as editor in chief of several healthcare B2B sites.

   

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