To Share or Not to Share: Patients Struggle to Share Health Information Online

Past Pew Research Center surveys have found that Americans are quite sensitive about their personal health information and worry about the ways it could be used: for example, whether it could hinder the ability to secure credit, insurance or jobs.

Still, the convenience of accessing one’s health records or interacting with one’s physician online has a growing appeal. Just over half of Americans (52%) feel it would be acceptable for doctors to use health information websites to manage patient records, according to a new Pew survey.

Some 20-percent of respondents said it would depend on the circumstance. While just 26-percent said this type of data sharing was unacceptable.

“It depends on exactly what records are shared,” one respondent said. “It would have to be a very secure site for me to trust it. Scheduling appointments online wouldn’t bother me though.”

“It’s OK if it’s my own HMO [health management organization] (Kaiser Permanente), but a third party website is unnecessary and unacceptable, [because] I want my health info kept confidential,” said one respondent.

The study surveyed 461 adults and nine online focus groups of 80 people and found that there are a variety of scenarios where many American would share personal information or permit surveillance in return for receiving something of value.

Those ages 50 and older are more likely than adults ages 18 to 49 to say this tradeoff would be acceptable to them. Those whose education stopped at high school (44%) found the data sharing as unacceptable compared to those who had some level of college (59%) were more comfortable with sharing personal data.

Some cited the benefits of being able to easily access their medical records and the more convenient interactions with providers’ offices as appealing to them. While others indicated their view depended on who would be able to access their data, as well as how vulnerable that data is.

According to one focus group participant,I can look up my cholesterol results going back 10 years and more. But that is not a public website, and I trust Kaiser Permanente, and they do very valuable research. I am even in a genetics study with them – they’ve got my DNA. But this is totally different from going through some third party website.”

Fear of hacking and how that data would be used helped to shape some respondents willingness to share.

“No matter how safe you think the site is, it’s not. Hackers can bypass anything if they choose to,” said one respondent.

“My health records are my business and no one else’s,” said one respondent. “No website is totally secure.”

According to Pew, many Americans are willing to share personal information to receive a tangible benefit, but they still show caution when disclosing that information and are displeased with what companies do with the information, once organizations have obtained the data.