Survey: Despite risks, patients want to share data

By Aditi Pai
05:00 am

PatientsLikeMesurveyA survey of 2,125 adults with health conditions who are already members of PatientsLikeMe found that 94 percent of adults would be willing to share their health information on social media if it helps doctors improve care even though a majority of those surveyed also understand the data could also be used negatively. The survey was done in partnership with the Institute of Medicine.

The same number of people, 94 percent, would also be willing to share their health information on social media if it would help other patients like them and 92 percent would be willing to share information to help researchers learn more about their disease.

Of this same group, 76 percent of respondents said they believe their health data from their personal health record could be used without their knowledge, 72 percent believed this information could be used to deny them health care benefits, and 66 percent were prepared for this data to be used to deny them job opportunities.

PatientsLikeMe offers users a platform to compare treatments, symptoms and experiences with other people. The communication is aimed at growing collaboration between people with the same health conditions, which the company said will help with "speeding up the pace of research and fixing a broken healthcare system".

The survey also found that 84 percent of adults would be willing to share their health information with drug companies to help them make safer products, and 78 percent would share information so that drug companies could learn more about their disease.

“It’s exciting to see research that so clearly illuminates the patient voice,” Sally Okun, a co-author on the paper and PatientsLikeMe’s Vice President of Advocacy, Policy and Patient Safety said in a statement. “This paper affirms the great value in sharing health data, and signals a new age in medicine where patients and researchers can learn in real-time from the shared experiences of others.”

The high percentage of people who are willing to share their health information in this survey might be as high as it is because all of the respondents are already a part of an online health sharing platform -- PatientsLikeMe. Okun told MobiHealthNews in an email that she conducted the study after the Consumer Reports National Testing and Research Center (CRNRC) completed theirs. Okun and her team were surprised by CRNRC's results -- that among a nationally representative sample of people, 40 percent of whom had at least one medical condition, 90 percent of respondents believed their data should be used to improve the care of future patients.

"We expected PatientsLikeMe to be higher because this group has more experience with illness and understands the value of sharing their health data more than the general population," Okun said. "So the questions are even more relevant to them, and a bias is there."

Other surveys, conducted last year, have found more hesitation around the idea of companies sharing health data with third parties.

Earlier this month, an Accenture survey found that if the personal data was only to be used by the provider, 32 percent of consumers were very likely to still use the product, 38 percent were somewhat likely, and 14 percent wouldn’t use the product. But when asked if the user would still use the product if personal data was shared by the provider with a third party, only 8 percent were very likely to use the product.

In July, Privacy Right Clearinghouse found that health and fitness apps might not even have that many policies in place to protect people's data, although last October, principal researcher at Microsoft Research Kate Crawford found that even if people don't use these apps, they might still be giving their data away on the internet inadvertently.

“We’re in a really interesting situation with health data,” she said at the time. “We have previously had HIPAA as the act that really tightly regulates how health data can move and be shared and that’s worked really well for doctors. But think about what happens when you get sick now. You probably type something into a search engine, put your symptoms in and see ‘what might be wrong with me?’ That data is completely unprotected by HIPAA.”


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