Many don’t want data shared, even for health studies

With more information available on phones and watches, most data is now health data, Penn researchers say. But a new study shows many have privacy concerns.

Consumers have serious concerns about sharing any of their personal information, including data that could be used for health purposes, such as research.

A new study shows that while some consumers may be more willing to share private information based on the reasons involved, some people’s views on sharing health records are tied more closely to their overall concerns for privacy.

Researchers from the University of Pennsylvania conducted the study, published in Jama Network Open on Jan. 24. The study gauged responses from more than 3,500 people.

“Although consumers’ willingness to share personal digital information for health purposes is associated with the context of use, many have strong underlying privacy views that affect their willingness to share,” the authors stated. “New protections may be needed to give consumers confidence to be comfortable sharing their personal information.”

The questions of sharing health data are more relevant as people generate information about their health in different ways. Hospitals and healthcare organizations are required by federal law to protect patient records. However, watches and phones produce enormous amounts of data, such as steps and heart rate, that don't have similar robust protections.

The proliferation of personal data comes along with the increased awareness of social factors influencing health.

Essentially, the authors note, “Most digital data are now health data.”

Still, many are uncomfortable with disclosing their personal information.

Overall, the researchers broke the participants into four groups in describing their overall willingness to share:

  • 337 (9.5%) were classified as “never share”;
  • 1116 (31.4%) were described as “averse to sharing”;
  • 1616 (45.6%) were classified as “uncertain about sharing”;
  • 474 (13.3%) classified as “agreeable to sharing”

Those who were white and non-Hispanic, with higher incomes and more conservative political views were generally less likely to share their data, the study found.

The study showed that more than half of the participants were unlikely to share, or were willing to share, regardless of the specific uses of the data.

The authors note the variety of ways data can be used. Information shared on social media can offer a window into mental health, while wearable devices track everything from sleep habits to physical activity.

Some showed more willingness to share their information based on how the data would be used and what information was being requested.

Participants in the study were asked about their feelings on data being utilized by three different users: a university hospital, a pharmaceutical company, and a digital technology company. Those surveyed indicated they were more willing to share their information with a hospital than a drug company or a digital tech firm.

Respondents also said they were more inclined to share information for research purposes than for improving health care quality or marketing.

The participants indicated they were more willing to share information from personal health care records, including electronic medical records, and less willing to share information about their finances from banks, the use of social media or their internet search history. Respondents were more willing to share walking activity from their phone than information from electronic health records, the study found.

Those surveyed were also asked about their willingness to share information regarding four health conditions: cancer, diabetes, depression, and COVID-19. Responses didn’t vary too widely, the researchers noted, but they indicated less willingness to share data related to depression and diabetes. They were more willing to share information relating to COVID-19 and cancer.

With so much data being available, researchers note there are greater opportunities for research and the development of tools to improve public health. But the authors also said the question remains if people would be more willing to share personal information for health studies if there were stronger privacy protections in place.

Slightly more than half of the participants (53%) were women, while 21% identified as Black and 24% identified as Hispanic. Roughly one-third (36%) were 60 years or older.

The study was done between July 10 and July 31, 2020.

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