A poll in late March of 4,364 patients finds 29 percent of respondents have withheld certain health information from their physician, 47 percent have not shared certain health information with an employer and 14 percent have withheld information from a health insurer.

What makes this poll different from others is that all the respondents use the PatientsLikeMe online communities to share information and experiences with other patients who have the same medical condition. The site presently has 98,000 patients discussing more than 500 different conditions.

"Here's a population of arguably the most open patients, who share detailed data about everything from their treatments to their sex lives on PatientsLikeMe, and yet some of these individuals feel uncomfortable sharing with other stakeholders in health care," says the Web site's co-founder Jamie Heywood in a statement. "If we're all going to make health care better, then it's time we really understand what's keeping patients from sharing information."

In general, respondents don't share information with their physician for "emotional" reasons--because they don't want to be lectured or embarrassed. But they had more practical reasons for withholding from employers and insurers, such as fears of losing jobs, promotions or coverage, or increased premiums.

More poll results are available here.

--Joseph Goedert

 

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