Patients struggle with sharing health information online, cite privacy concerns, breaches, Pew report says
Just over half of Americans feel it would be acceptable for doctors to use health information websites to manage patient records, according to a new Pew Research Center survey.
Another 20 percent of respondents said it would depend on the scenario. 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."
[See also: Security among 5 biggest interoperability roadblocks.]
"They would have to prove it’s a secure site,” another respondent said. “Also there should be some sort of a major fine if it’s not secure at all times.”
The Pew study surveyed 461 U.S. adults and nine online focus groups of 80 people and found there are a variety of circumstances that many Americans would share personal information or permit surveillance in return for receiving something they perceived as valuable.
An overwhelming number of respondents said their comfort in sharing information depended on the scenario – trust, circumstances, how the data is stored and how it is used. The relationship with the organization requesting the information determined the willingness of the respondent to provide personal information.
Past Pew surveys have shown that Americans are sensitive when it comes to sharing personal health information and worry about the ways in could be used: for example, whether it could hinder the ability to secure credit, insurance or jobs.
In this survey, two-to-one respondents said the ability to access health information and easily talk online with a physician had a strong appeal. These same respondents were attracted to the ease in which to schedule appointments.
Those respondents over the age of 50 were more likely to find it acceptable to share personal health data, than with those between the ages of 18 and 49. Furthermore, those with some college education were more likely than those without to be alright with sharing health data.
Respondents who found sharing health information unacceptable had very strong opinions as to their reasoning.
“My health records are my business and no one else’s," said one respondent. "No website is totally secure."
“My health records are confidential," said another. "I don’t want them in the hands of someone unscrupulous or marketing companies possibly trying to recommend a drug or something based on a condition I may have."
Although many Americans are willing to share personal information to receive tangible benefits, according to Pew, they still show caution when disclosing information and are displeased with what companies do with the information, once organizations have obtained the data.