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	<title>e-Patients.net</title>
	<link>http://e-patients.net</link>
	<description>because health professionals can&#039;t do it alone</description>
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		<title>&#8220;Check the box for e-Patient&#8221;--e-Patient Dave</title>
		<description><![CDATA[From SPM member Keith Boone, author of the e-Patient Rap, whose first verse I did in my TEDx Maastricht talk: My daughter did something interesting a couple of weeks ago when we went to her pediatrician&#8217;s office. We asked for her records, and she told the clerk to make sure she was listed as being [...]]]></description>
		<link>http://e-patients.net/archives/2012/05/check-the-box-for-e-patient.html</link>
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		<title>Send a message to the Whitehouse: Show the strength of support for OA--Gilles Frydman</title>
		<description><![CDATA[Guest post from Cameron Neylon. Cameron is the incoming Advocacy Director at PLoS and a biophysics researcher based in the UK. The US Executive branch has been taking a close look at the issues of public access to publicly funded research for some time now. There is a short term opportunity to influence the federal government [...]]]></description>
		<link>http://e-patients.net/archives/2012/05/send-a-message-to-the-whitehouse-show-the-strength-of-support-for-oa.html</link>
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		<title>Cleveland Clinic&#8217;s John Sharp with a review of Social Media in Healthcare--Ileana Balcu</title>
		<description><![CDATA[Member John Sharp from Cleveland Clinic has a great review of Social Media in Health Care in the last two years. The Society for Participatory Medicine is also mentioned. http://www.ihealthbeat.org/perspectives/2012/a-look-at-social-media-in-health-care-two-years-later.aspx]]></description>
		<link>http://e-patients.net/archives/2012/05/cleveland-clinics-john-sharp-with-a-review-of-social-media-in-healthcare.html</link>
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		<title>What Do Aggregators Know About Me and Why It’s Important--e-Patient Dave</title>
		<description><![CDATA[Guest post from SPM member Adrian Gropper, MD of HealthURL.com. Information is the foundation for patient engagement. Nothing about me without me. Although personal medical information starts out with your various institutions and doctors, it doesn’t just stay with them. The information moves and collects in secondary locations such as insurers (claims), public health agencies [...]]]></description>
		<link>http://e-patients.net/archives/2012/05/what-do-aggregators-know-about-me-and-why-it%e2%80%99s-important.html</link>
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		<title>KQED blog on Hugo Campos and his quest to access his data--e-Patient Dave</title>
		<description><![CDATA[KQED blogger and SPM member Eve Harris has written a great brief piece on Hugo&#8217;s desire to access the data from his implanted defibrillator, beginning: Hugo Campos was apologetic about postponing a scheduled interview with me two weeks ago. In a midday email he wrote, “Just had the biggest arrhythmia ever. I’m trying to recover [...]]]></description>
		<link>http://e-patients.net/archives/2012/05/kqed-blog-on-hugo-campos-and-his-quest-to-access-his-data.html</link>
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		<title>Storify feed from Health FOO this weekend--e-Patient Dave</title>
		<description><![CDATA[Here&#8217;s a quick starter note &#8211; I hope to say more later. Health FOO is a by-invitation &#8220;unconference&#8221; from O&#8217;Reilly Media and Robert Wood Johnson Foundation this weekend at Microsoft&#8217;s development center in Cambridge, MA.  SPM members I&#8217;ve seen so far include past president and founder Alan Greene MD, founder and ACOR founder Gilles Frydman, [...]]]></description>
		<link>http://e-patients.net/archives/2012/05/storify-feed-from-health-foo-this-weekend.html</link>
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		<title>HIT Journalist becomes patient advocate after seeing the danger of uncoordinated care and poorly designed workflows--Ileana Balcu</title>
		<description><![CDATA[Neil Versel, a HIT journalist, relates a very touching story of his father&#8217;s care at two different hospitals: one was uncoordinated and prone to errors and near misses, another one was quite a good experience. Unfortunately Neil&#8217;s father had a rare poorly known disease (MSA) and he died from it. The whole story with details is here: http://www.meaningfulhitnews.com/2012/05/17/mark-versel-1944-2012/ [...]]]></description>
		<link>http://e-patients.net/archives/2012/05/hit-journalist-becomes-patient-advocate-after-seeing-the-danger-of-uncoordinated-care-and-poorly-designed-workflows.html</link>
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		<title>Hugo Campos has major arrhythmia, goes to ER, wants his data even more now--e-Patient Dave</title>
		<description><![CDATA[SPM member Hugo Campos has had much coverage here and in the media (NPR, SF Chronicle, San Jose Mercury-News) for his desire to see the raw data coming out of his implanted defibrillator. The vendor, Medtronic, feels that its responsibility is to give Hugo&#8217;s doctor the data, to understand what episodes happen in Hugo&#8217;s heart, [...]]]></description>
		<link>http://e-patients.net/archives/2012/05/hugoocs-er-challenge-may-9-2012-2.html</link>
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		<title>Is &#8220;gimme my damn data&#8221; damning to patients?--Kathleen O'Malley</title>
		<description><![CDATA[E-Patient Hugo Campos, whose quest to obtain his medical data has been followed by the media (including this blog) over the past several months, appears in a new interview in SFGate.com. He discusses a common fear of e-patients &#8212; that he may be perceived by clinicians as a &#8220;difficult patient&#8221; just because he wants his [...]]]></description>
		<link>http://e-patients.net/archives/2012/05/is-gimme-my-damn-data-damning-to-patients.html</link>
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		<title>@Ahier on the AHA&#8217;s &#8220;it&#8217;s too hard&#8221;: Planetree hospitals give access while still in-patient--e-Patient Dave</title>
		<description><![CDATA[[Reminder: The place to register an official comment to the government is this page on Regulations.gov.] SPM member Brian Ahier is Health IT Evangelist at Mid-Columbia Medical Center in The Dalles, Oregon. Today he posted this on Google+; reposted here with permission: (emphasis added) First, I want to say that I am strongly opposed to [...]]]></description>
		<link>http://e-patients.net/archives/2012/05/ahier-on-the-ahas-its-too-hard-planetree-hospitals-already-do-it.html</link>
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		<title>Millenson on THCB: Will Regina Holliday Become Health Care&#8217;s Rosa Parks?--e-Patient Dave</title>
		<description><![CDATA[[Reminder: The place to register an official comment to the government is this page on Regulations.gov. Monday May 7 is the last day.] How slowly culture changes. In September 2009, at the founding of our Society for Participatory Medicine, the cover of Health Leaders magazine said the e-patient was The Patient of the Future. It was a great, in-depth article [...]]]></description>
		<link>http://e-patients.net/archives/2012/05/millenson-on-thcb-will-regina-holliday-become-health-cares-rosa-parks.html</link>
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		<title>Monthly introduction to e-Patients.net, blog of the Society for Participatory Medicine--e-Patient Dave</title>
		<description><![CDATA[This is our monthly introduction to e-Patients.net, blog of the Society for Participatory Medicine. Follow the Society on Twitter (@S4PM), Facebook, and LinkedIn.  Here&#8217;s how to become a Society member, individual or corporate. Our publications: This blog is e-patients.net. Subscribe via RSS or email, tweets etc. Our open-access journal is the Journal of Participatory Medicine (Twitter: @JourPM) &#8220;Participatory Medicine is a movement in which [...]]]></description>
		<link>http://e-patients.net/archives/2012/05/monthly-introduction-to-e-patients-net-blog-of-the-society-for-participatory-medicine-3.html</link>
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		<title>SPM&#8217;s responses to the proposed rules for Meaningful Use Stage 2--e-Patient Dave</title>
		<description><![CDATA[Afternoon additions: You too can submit your opinion on the official public comment site. They even allow uploading attachments. As I just told a friend on Facebook: &#8220;How often, before this administration, did Washington make it truly easy for anyone to tell their story, from home? This administration is really open to this, and I [...]]]></description>
		<link>http://e-patients.net/archives/2012/05/spms-responses-to-the-proposed-rules-for-meaningful-use-stage-2.html</link>
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		<title>International survey for chronic disease patients--e-Patient Dave</title>
		<description><![CDATA[Doctoral student Mohamed Chekli met SPM member Matthew Katz MD (radiologist), and asked for help with a survey: Would you please put me in touch with people in your network who are offering personal health records (or patient portals) to individuals dealing with chronic disease to empower them and help them with the self-management of [...]]]></description>
		<link>http://e-patients.net/archives/2012/05/international-survey-for-chronic-disease-patients.html</link>
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		<title>&#8220;With this the AHA admits that it does not know what an EHR was and is meant for&#8221;--e-Patient Dave</title>
		<description><![CDATA[Cross-posted from the ICMCC blog, a post by its chairman, Lodewijk Bos, a Dutch cancer patient who is a great advocate for information, technology, and patient engagement. The ICMCC news feed is a terrific daily compilation of health IT news.  A long-time advocate for patient empowerment &#8211; from his own experience beating unbeatable odds &#8211; [...]]]></description>
		<link>http://e-patients.net/archives/2012/05/with-this-the-aha-admits-that-it-does-not-know-what-an-ehr-was-and-is-meant-for.html</link>
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		<title>Important ONC/NeHC Webinar, noon ET &#8211; the Patient&#8217;s Role in EHR Data Quality (SPM speaking)--e-Patient Dave</title>
		<description><![CDATA[I should have announced this long ago but I&#8217;ve just been too busy for my own good. Go register now! FREE! Attendance is limited to 1,000. (It&#8217;ll be archived online of course.) Or click the graphic to register: Why this matters: Data quality is important, and it&#8217;s not guaranteed. As long-time readers (and members of [...]]]></description>
		<link>http://e-patients.net/archives/2012/05/important-oncnehc-webinar-noon-et-the-patients-role-in-ehr-data-quality-spm-speaking.html</link>
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		<title>American Hospital Association declares war on patient empowerment. Please act.--e-Patient Dave</title>
		<description><![CDATA[[Reminder: The place to register an official comment to the government is this page on Regulations.gov. Monday May 7 is the last day.] ____________ New, 11pm ET on May 2: See Regina Holliday&#8217;s addition at bottom. Evening addition: In a comment below, SPM policy chair David Harlow notes that (perhaps in addition to what you do below), [...]]]></description>
		<link>http://e-patients.net/archives/2012/05/american-hospital-association-declares-war-on-patient-empowerment-please-act.html</link>
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		<title>Making Sense of &#8220;Patient-Centered Care&#8221;--Kathleen O'Malley</title>
		<description><![CDATA[The Journal of Participatory Medicine received a nice recommendation from Paul Levy, former CEO of Beth Israel Deaconess Medical Center, in his blogpost on where to find reliable information about patient-centered medicine. Levy also recommends a new non-profit site called uPrevent, which translates research findings into actionable information for patients. Read the post at http://www.golocalprov.com/health/paul-levy-how-to-become-a-more-informed-patient/.]]></description>
		<link>http://e-patients.net/archives/2012/04/making-sense-of-patient-centered-care.html</link>
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		<title>Globe article on EMRs: status and the safety issue--e-Patient Dave</title>
		<description><![CDATA[In today&#8217;s Boston Globe, the cover story for the daily &#8221;G&#8221; magazine is &#8220;Record-Keeping 2.0,&#8221; by Chelsea Conaboy (@cconaboy). Subtitled &#8220;Medical care is shifting to electronic data files &#8211; but how safe is it?&#8221;, it&#8217;s a good mass-market introduction to the subject and where we sit today. If your grandmother or neighbor wonders what all the [...]]]></description>
		<link>http://e-patients.net/archives/2012/04/globe-article-on-emrs-status-and-the-safety-issue.html</link>
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		<title>Let&#8217;s Get Medical Info as Good as Our Pets Get! &#8212; A Petition--Kathleen O'Malley</title>
		<description><![CDATA[SPM member Ken Farbstein sent us this invitation to help persuade the Office of the National Coordinator for Health Information Technology to include printed summaries of doctor visits in the ONC&#8217;s definition of meaningful use. After our pets go to the veterinarian, many of us promptly and routinely get a paper summary that instructs us [...]]]></description>
		<link>http://e-patients.net/archives/2012/04/lets-get-medical-info-as-good-as-our-pets-get-a-petition.html</link>
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