{"id":3187,"date":"2009-09-17T12:11:12","date_gmt":"2009-09-17T17:11:12","guid":{"rendered":"http:\/\/pmedicine.org\/epatients\/?p=3187"},"modified":"2009-09-17T12:13:54","modified_gmt":"2009-09-17T17:13:54","slug":"health-it-policy-e-patients-want-access","status":"publish","type":"post","link":"https:\/\/participatorymedicine.org\/epatients\/2009\/09\/health-it-policy-e-patients-want-access.html","title":{"rendered":"Health IT Policy: E-patients want access"},"content":{"rendered":"<p>What would you say to policymakers who are discussing the implementation of a national health information infrastructure?<\/p>\n<p>Here&#8217;s what I&#8217;d say: E-patients  want access to tools and information.\u00a0 Many will find what they need, many will  not. <strong>You can help.<\/strong><!--more--><\/p>\n<p>Some background:<\/p>\n<p>The <a href=\"http:\/\/healthit.hhs.gov\/portal\/server.pt\" target=\"_blank\">Office of the National Coordinator for Health Information Technology<\/a> is holding a hearing on Friday, September 18, to review privacy and security issues before the Health IT Policy committee.<\/p>\n<p>Check out the <a href=\"http:\/\/healthit.hhs.gov\/portal\/server.pt?open=512&amp;objID=1269&amp;parentname=CommunityPage&amp;parentid=5&amp;mode=2#Meetings\" target=\"_blank\">line-up<\/a> for my panel, &#8220;Patient Choice, Control, and Segmentation of Health Information&#8221;:<em><\/em><\/p>\n<ul>\n<li>\n<div style=\"margin: 0in 0in 0pt;\"><a href=\"http:\/\/www.patientprivacyrights.org\/site\/PageServer?pagename=Board_Of_Directors#DeborahPeel\" target=\"_blank\">Deborah Peel<\/a>, Patient Privacy Rights<\/div>\n<\/li>\n<li>\n<div style=\"margin: 0in 0in 0pt;\"><a href=\"http:\/\/www.aarp.org\/aarp\/About_AARP\/leadership\/articles\/John_Rother.html\" target=\"_blank\">John Rother<\/a>, American Association of Retired  Persons<\/div>\n<\/li>\n<li>\n<div style=\"margin: 0in 0in 0pt;\"><a href=\"http:\/\/www.regenstrief.org\/bio\/full?member=moverhage\" target=\"_blank\">Marc  Overhage<\/a>, Regenstrief Institute<\/div>\n<\/li>\n<li><a href=\"http:\/\/www.pewinternet.org\/Experts\/Susannah-Fox.aspx\" target=\"_blank\">me<\/a><\/li>\n<\/ul>\n<p>Each person will have five minutes to get some essential points across and then engage in a discussion, so if you are really a health data geek, <a href=\"http:\/\/healthit.hhs.gov\/portal\/server.pt?open=512&amp;objID=1273&amp;parentname=CommunityPage&amp;parentid=0&amp;mode=2&amp;in_hi_userid=10741&amp;cached=true\" target=\"_blank\">listen in<\/a> starting at 8:30am Eastern.<\/p>\n<p>Other panels will cover data stewardship, de-identification\/re-identification, and transparency\/accountability. I&#8217;m no expert on HIPAA or code, but yes, I will suggest that Paul Ohm&#8217;s article, &#8220;<a href=\"http:\/\/papers.ssrn.com\/sol3\/papers.cfm?abstract_id=1450006\" target=\"_blank\">Broken Promises of Privacy<\/a>,&#8221; be considered required reading for all the reasons I wrote about <a href=\"https:\/\/participatorymedicine.org\/epatients\/archives\/2009\/09\/hipaas-broken-promise.html\" target=\"_blank\">here<\/a>.<\/p>\n<p><em>My statement:<\/em><\/p>\n<p>In the year 2000, the Pew Internet Project began surveying the American  people about the social impact of the internet. Health care quickly emerged as a  key area of study, driven by the fact that 6 in 10 American adults go online for  health information and many report that they make health care decisions based on  what they find. For shorthand, I call this group &#8220;e-patients.&#8221;<\/p>\n<p>The Pew Internet Project\u2019s most recent research shows that American adults  have different expectations about access to information now than even just two  years ago, partly due to the availability of new tools, partly due to mobile  internet adoption, and partly due to a new zeitgeist.<\/p>\n<p>In the early days of the internet, e-patients routed around doctors who told  them not to go online by either changing doctors or going underground with their  research. <strong>E-patients are moving out ahead once again,<\/strong> not waiting for  policymakers to figure out the HIPAA implications of social media, but just  getting out there and taking advantage of the tools available.<\/p>\n<p>For example:<\/p>\n<ul type=\"disc\">\n<li>59% of e-patients have consulted blog comments, hospital reviews, doctor  reviews, and podcasts about health and health care.<\/li>\n<li>20% of e-patients have posted comments, reviews, photos, audio, video or  tags related to health care.<\/li>\n<\/ul>\n<p>However, Americans\u2019 longstanding practices of consulting a health  professional, a trusted friend, or a wise family member persist. When asked  which sources they turn to for assistance, the internet comes in third (tied  with books) behind asking a health professional and talking with friends or  family members. There is no evidence that the internet is replacing health  professionals, or Dr. Mom, but rather <strong>it is enabling a new way to connect to  information and resources.<\/strong><\/p>\n<p>Broadband and wireless internet connections are driving the adoption of  social media, allowing Americans to become used to being able to not only  access, but share information anytime, anywhere. Fully 56% of American adults  have accessed the internet via a wireless connection and when we include mobile  devices in our definition of the internet user population, historical  differences between white and African American adults are erased.\u00a0 <strong>Mobile could  be a game-changer for health and health care<\/strong>, so please be sure to include a  discussion of wireless access in your deliberations.<\/p>\n<p>Finally, our surveys find that the internet is increasingly helpful to  American adults seeking health information.<\/p>\n<ul type=\"disc\">\n<li>60% of e-patients (or 42% of all adults) say 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.<\/li>\n<li>3% of e-patients say 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.<\/li>\n<\/ul>\n<p>Millions of people are taking part in the online health revolution we first  documented in 2000. Instead of restricting access to information that can aid  health decisions, I urge you to consider the lessons from our data. <strong>E-patients  want access to tools and information.\u00a0 Many will find what they need, many will  not. You can help.<\/strong><\/p>\n<p><em>(Please leave a comment if you have anything else you&#8217;d like me to share with the Health IT Policy committee.)<\/em><\/p>\n<p>&nbsp;<\/p>\n","protected":false},"excerpt":{"rendered":"<p>What would you say to policymakers who are discussing the implementation of a national health information infrastructure? Here&#8217;s what I&#8217;d say: E-patients want access to tools and information.\u00a0 Many will [&hellip;]<\/p>\n","protected":false},"author":29,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"give_campaign_id":0,"_et_pb_use_builder":"","_et_pb_old_content":"","_et_gb_content_width":"","_price":"","_stock":"","_tribe_ticket_header":"","_tribe_default_ticket_provider":"","_tribe_ticket_capacity":"0","_ticket_start_date":"","_ticket_end_date":"","_tribe_ticket_show_description":"","_tribe_ticket_show_not_going":false,"_tribe_ticket_use_global_stock":"","_tribe_ticket_global_stock_level":"","_global_stock_mode":"","_global_stock_cap":"","_tribe_rsvp_for_event":"","_tribe_ticket_going_count":"","_tribe_ticket_not_going_count":"","_tribe_tickets_list":"[]","_tribe_ticket_has_attendee_info_fields":false,"jetpack_post_was_ever_published":false,"_jetpack_newsletter_access":"","_jetpack_dont_email_post_to_subs":false,"_jetpack_newsletter_tier_id":0,"_jetpack_memberships_contains_paywalled_content":false,"_jetpack_memberships_contains_paid_content":false,"footnotes":"","jetpack_publicize_message":"","jetpack_publicize_feature_enabled":true,"jetpack_social_post_already_shared":false,"jetpack_social_options":{"image_generator_settings":{"template":"highway","default_image_id":0,"font":"","enabled":false},"version":2}},"categories":[367,59,62],"tags":[2077,2095,2097,2098,2101,2080,854,417,2089,498,306,2073,810,2090,2084,2072,2102,2100,207,2094,2075],"coauthors":[],"class_list":["post-3187","post","type-post","status-publish","format-standard","hentry","category-medical-records","category-policy-issues","category-reforming-healthcare","tag-american-adults","tag-american-association-of-retired-persons","tag-choice-control","tag-data-stewardship","tag-doct","tag-early-days-of-the-internet","tag-health-care-decisions","tag-health-data","tag-health-information-infrastructure","tag-health-information-technology","tag-internet-adoption","tag-internet-health-care","tag-national-coordinator","tag-national-health-information","tag-new-tools","tag-patient-choice","tag-patient-privacy","tag-patient-privacy-rights","tag-pew-internet-project","tag-regenstrief-institute","tag-social-impact-of-the-internet"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.3 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Health IT Policy: E-patients want access - SPM Blog<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/participatorymedicine.org\/epatients\/2009\/09\/health-it-policy-e-patients-want-access.html\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Health IT Policy: E-patients want access - SPM Blog\" \/>\n<meta property=\"og:description\" content=\"What would you say to policymakers who are discussing the implementation of a national health information infrastructure? 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