I scan menus for keywords (fig, parsnips, salmon\u2026) and it turns out I scan Twitter the same way, looking for anyone who is talking about my favorite topics (data, consumers, information quality\u2026)<\/p>\n\n
So when I saw Jonathan Richman<\/a>\u2019s tweet the other night, I couldn\u2019t resist it:<\/p>\n\n Anyone ever seen data on the overall accuracy of medical information found online? Need help for some final stats for #fdasm<\/a><\/p>\n\n Short answer:<\/i><\/p>\n\n No.<\/b><\/p>\n\n Long answer:<\/i><\/p>\n\n The Pew Research Center\u2019s Internet & American Life Project<\/a> has been reporting on the social impact of the internet since 2000, when \u201cinformation quality\u201d on health websites was a big part of the conversation. It was the era of wagging fingers, scolding patients for straying too far outside their boundaries, and Pew Internet data was ammunition.<\/p>\n\n We released our first report about the internet\u2019s impact on health & health care in November 2000. The Medical Library Association<\/a> (MLA) contacted us, asking for research looking at how consumers decide which sites\/sources to trust. With their help we created a set of questions asking first\u00a0if respondents went online for health info, then asking if they look for the source and date of the info they find (the two key quality indicators according to the MLA).<\/p>\n\n Our 2002 report, Vital Decisions<\/a>, reported the findings:<\/p>\n\n Only about one quarter of health seekers follow the recommended protocol on thoroughly checking the source and timeliness of information and are vigilant about verifying a site\u2019s information every time they search for health information.\u00a0 Another quarter of health seekers check a site\u2019s information \u201cmost of the time.\u201d\u00a0 Half of all health seekers search for medical advice and \u201conly sometimes,\u201d \u201chardly ever,\u201d or \u201cnever\u201d check the source or date of the information they read online.<\/p>\n\n We repeated the source\/date questions in August 2006 and reported on the \u201cdemand side\u201d of health information in our report, Online Health Search 2006<\/a>:<\/p>\n\n Three-quarters of health seekers do not consistently check the source and date of the health information they find online.<\/p>\n\n Unbeknownst to us, the U.S. Department of Health and Human Services<\/a> was in the field with their study <\/a>about the \u201csupply side\u201d of health info: Estimating the Proportion of Health Related Websites Disclosing Information That Can Be Used to Assess Their Quality.<\/p>\n\n I summarized their findings in our report, hoping to soften the impact of the ammunition we were handing out:<\/p>\n\n Health seekers might be forgiven if they give up what at times is a search for a needle in a haystack. A recent study commissioned by the U.S. Department of Health and Human Services (HHS) finds that a tiny percentage of health sites display the source and date of the information on their pages\u2026<\/p>\n\n HHS\u2019s Office of Disease Prevention and Health Promotion, working with industry experts, identified six types of information that should be publicly disclosed to health seekers: the identity of the site\u2019s sponsors, the site\u2019s purpose, the source of the information provided, privacy policies to protect users\u2019 personal information, how users can provide feedback, and how the content is updated. Of the 102 websites reviewed for the report, none met all six of the disclosure criteria and only six complied with more than three criteria. Just 4% of \u201cfrequently visited\u201d health websites disclosed the source of the information on their pages and 2% disclosed how the content is updated. Less-popular health sites fared even worse: 0.3% of these sites listed their content\u2019s source and only 0.1% disclosed how the content is updated.<\/p>\n\n After reading the HHS study, looking at our data, and scanning the changing landscape (ie, consumers diversifying their online research to include user-generated content), I decided that trying to measure the quality of health info had run its course as a research question.<\/p>\n\n Pew Internet was also gathering evidence that consumers were not being harmed by inaccurate information. In a 2008 survey we conducted in partnership with the California HealthCare Foundation<\/a>, just 3% of e-patients said they or someone they know has been harmed by following medical advice or health information found on the internet, a number that has remained stable since 2006. Meantime, 60% of e-patients (or 42% of all adults) said they or someone they know has been helped by following medical advice or health information found on the internet. That\u2019s an increase from 2006 when 31% of e-patients (25% of all adults) said that.<\/p>\n\n After exchanging a few tweets and then sending a long email, I was pleased to see our data used in Jonathan\u2019s upcoming presentation<\/a> to the U.S. Food and Drug Administration<\/a>\u2019s hearing on social media. But I worry that only the \u201cthree-quarters don\u2019t check\u201d data made it in to his slides, not the needle-in-a-haystack caveat provided by the HHS study.<\/p>\n\n