tag:blogger.com,1999:blog-20209892008315740352024-03-13T00:33:58.438-04:00The New Life of e-Patient DaveIn 2007, supported by an extraordinary team of family, friends, and medical staff, I stomped the snot out of a nasty cancer that was on its way to killing me. I've since learned that the way I did it has a lot in common with the advice of the "e-patients" movement, so I've changed my blogger name from Patient Dave to e-Patient Dave.e-Patient Davehttp://www.blogger.com/profile/11608258246509102466noreply@blogger.comBlogger229125tag:blogger.com,1999:blog-2020989200831574035.post-60800796505734233742012-02-18T17:22:00.004-05:002012-02-18T17:40:32.245-05:00Love song: "If I Had My Way" - with a twistToday's my birthday, and on Twitter I wisecracked to @MeredithGould "Yes. I am Queen of Everything today, and enjoying it. Step aside."<br /><br />I happen to be on a plane to Las Vegas, with my wife - we both have conferences next week - and the queen reference made me remember a wonderful song sung by some great barbershop quartets: "If I Had My Way." Lyrics (from <a href="http://www.sing365.com/music/lyric.nsf/If-I-Had-My-Way-lyrics-Frank-Sinatra/439D754B107C476B4825692100238A9A" style="font-style: normal; ">sing365.com</a>):<br /><br /><blockquote style="font-style: normal; ">I'd like to make your golden dreams come true, dear,<br />If I only had my way.<br />A paradise this world would seem to you, dear,<br />If only I had my way.<br /><br />If I had my way, dear, forever there'd be<br />A garden of roses for you and for me,<br />A thousand and one things, dear, I would do,<br />Just for you, just for you, just for you.</blockquote><blockquote style="font-style: normal; ">If I had my way, we would never grow old,<br />And sunshine I'd bring every day,<br />You would reign all alone,<br />like a queen on a throne,<br />If I had my way.<br /></blockquote><br />Well, what a difference music and performance add to the words. Listen to this - a hallway pickup rendition at barbershop's Harmony College Northeast, 2009. It's a trademark song of world champion quartet "Gotcha!", which was the resident supergroup at this "HCNE." Part of the barbershop tradition is singing with strangers in the hobby, and this time a girl named Christina took the tenor part. Her dad - my chorus director - turned on his flipcam halfway through. Listen:<br /><br /><object width="420" height="315"><param name="movie" value="http://www.youtube.com/v/uoFLaVs9Y2A?version=3&hl=en_US"></param><param name="allowFullScreen" value="true"></param><param name="allowscriptaccess" value="always"></param><embed src="http://www.youtube.com/v/uoFLaVs9Y2A?version=3&hl=en_US" type="application/x-shockwave-flash" width="420" height="315" allowscriptaccess="always" allowfullscreen="true"></embed></object><br /><br />He says she'd just learned the song the night before. Both her parents direct championship-level choruses, so I suppose she has an unfair advantage.<br /><br />But that's barbershop, folks, and that's why I love it. The <i>incredible </i>chords (note - it sounds like it's been Autotuned, but that's real and live - it takes skill), the often-emotional arrangements, and the incredible willingness of champion quartets to sing with you.e-Patient Davehttp://www.blogger.com/profile/16381434866099596466noreply@blogger.com1tag:blogger.com,1999:blog-2020989200831574035.post-40884585203704795382011-08-28T20:26:00.029-04:002011-08-28T23:35:59.354-04:00Extreme Makeover Home Edition: the deaths in America of two young fathers<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgSfB3R26B-FyBYDOcR9dnRursr_NoqDHPScA8OfNwrezsip8DnxWX_9ySuagRGlw2oKSFL5jy_7_cDyT3IMAS4V7XQaBe_9kkGuIUrNK0pYyxAMeXmspv-7KG7g7u-JNSfG4em4X7MbWw/s1600/Extreme+Makeover+logo.png" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 200px; " src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgSfB3R26B-FyBYDOcR9dnRursr_NoqDHPScA8OfNwrezsip8DnxWX_9ySuagRGlw2oKSFL5jy_7_cDyT3IMAS4V7XQaBe_9kkGuIUrNK0pYyxAMeXmspv-7KG7g7u-JNSfG4em4X7MbWw/s320/Extreme+Makeover+logo.png" border="0" alt="" id="BLOGGER_PHOTO_ID_5646076563898790066" /></a><p>My wife likes to watch Extreme Makeover, Home Edition. <a href="http://abc.go.com/shows/extreme-makeover-home-edition/video-detail/bonus-scenes/urban-family-bonus-scene-3/pl_PL5520951/vd_VD5593231">Tonight's episode</a> tells of Pennsylvania resident Trisha Urban. </p><p>In February 2009 Trisha was pregnant and her water broke. Before they left for the hospital her husband went to do some last minute farm chores and never came back.</p><p>He had died, age 30. It seemed odd that the show didn't say how, so I googled. The Reading <i>Eagle </i><a href="http://readingeagle.com/article.aspx?id=124758">had the immediate story</a> of the death and the birth. But then this, a year later in the Allentown <i>Morning Call</i>: <a href="http://articles.mcall.com/2010-04-04/news/all-a1_5healthcare.7224821apr04_1_health-insurance-health-care-health-plan">For one Valley family, reform's 'too late for us'</a></p><p></p><blockquote>Trisha and Andrew Urban once counted themselves among the ''lucky ones'' -- the people covered by health insurance. In 2008, Trisha was well into her first pregnancy and Andrew had developed a serious heart condition. Doctor visits became routine.<p></p><p>But their luck turned in September 2008. Their health insurance company sent them a letter saying Andrew's full-time internship, part of getting his doctorate in psychology, was only part time. The company dropped them from the health plan.
<br />
<br />The Urbans and the university wrote letters and argued the internship was full time and the insurance should be valid, Trisha said. But to no avail. When they tried to get insurance elsewhere, they were denied because of their pre-existing conditions.
<br />
<br />Five months after losing their insurance, Andrew Urban died. That same day, his daughter, Cora Urban was born.</p><p>About a month later, with mounting debt and mourning the loss of her husband, Trisha received another letter from her health insurance company: She and her late husband had been reinstated on the plan.
<br />
<br />''Unfortunately, the health care reform is too late for us,'' said Urban, 33, of Tilden Township.</p></blockquote>So what the show didn't say is that this young father had a serious heart condition, was cut off from care by the American healthcare system, and died from the condition on the day his daughter was born.<div>
<br /></div><div>My mind shot back to late 2008, a year after my illness, when I had just begun my interest in healthcare. I'd been reading Tom Daschle's powerful, informative book <i>Critical</i>, and <a href="http://patientdave.blogspot.com/2008/12/tom-daschles-healthcare-book-critical.html" target="epd">blogging</a> about it. He<i> </i>relates how President after President since Roosevelt had tried to provide healthcare for all (which every developed nation has, except ours), and time after time, one interest or another had blocked the change. As I read and blogged, the Urbans had just been cut off.<div><p></p><p>And my mind shot next to another academic who had no health insurance, so his access too was denied until for him it was too late: Fred Holliday, husband of my friend Regina, the amazing mural painter, of <a href="http://reginaholliday.blogspot.com/" target="epd">ReginaHolliday.blogspot.com</a>. He died a few months after Urban.
<br />_________</p><p>I was raised being taught that America is the land of opportunity, but I mourn that these two young fathers' deaths involved something else distinctly American: <i>denying</i> healthcare to people who need it. It clashes loudly with "land of opportunity."</p><p>Today America's health reform bill (Patient Protection and Affordable Care Act) has not yet been fully executed - tens of millions still don't have coverage - but the law is passed and the wheels are turning. I'm so glad this administration got the job done: Thanks to the President, and thanks to every legislator, and hard-working aide and advocate, who took America where it has never been before: Extreme Makeover, Health Edition.
<br />_________</p><span style="font-style:italic; size=70%">I'm posting this on my old personal blog, where I wrote about health issues before I went into business. This topic isn't specific to patient engagement - except that it frustrates patients who do want to be responsible for themselves and access the care they need.
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<br /></div></div>e-Patient Davehttp://www.blogger.com/profile/16381434866099596466noreply@blogger.com10tag:blogger.com,1999:blog-2020989200831574035.post-51133030234047654922011-03-09T19:55:00.007-05:002011-03-09T21:23:41.858-05:00Building a career as a "public patient"<i>To newcomers: this is my original blog, <a href="http://patientdave.blogspot.com/2007/11/hello-world.html">started</a> in 2007, months before I <a href="http://patientdave.blogspot.com/2008/01/e-patient-yes-e-patient.html">discovered</a> the word "e-patient." Today my business website is <a href="http://epatientdave.com/">ePatientDave.com</a>. For this series, I decided to return to my roots.<br />__________</i><div><i><br /></i>Two years ago, when I was just starting to build a career in public speaking, I was constantly stymied by the fact that nobody wanted to pay for patients to speak - and, at least as importantly, if a conference organizer <i>did </i>want a patient speaker, they had nowhere to turn.<br /><br />On this blog, I posted <a href="http://patientdave.blogspot.com/2009/01/call-for-patients-speakers-bureau.html">A Call for Patients Speakers Bureau</a>. Excerpt:<br /><blockquote>We need to create a speakers bureau that lists informed patients who are available to participate in conferences and other speaking engagements. I think this idea was first suggested to me by the wonderful <a href="http://tedeytan.com/" style="color: rgb(51, 102, 153); ">Ted Eytan MD<img id="snap_com_shot_link_icon" class="snap_preview_icon" src="http://i.ixnp.com/images/v6.58/t.gif" style="border-top-width: 0px; border-right-width: 0px; border-bottom-width: 0px; border-left-width: 0px; padding-top: 1px; padding-right: 0px; padding-bottom: 0px; padding-left: 0px; border-top-style: solid; border-right-style: solid; border-bottom-style: solid; border-left-style: solid; border-top-color: rgb(204, 204, 204); border-right-color: rgb(204, 204, 204); border-bottom-color: rgb(204, 204, 204); border-left-color: rgb(204, 204, 204); margin-top: 0px !important; margin-right: 0px !important; margin-bottom: 0px !important; margin-left: 0px !important; max-height: 2000px; max-width: 2000px; min-width: 0px; min-height: 0px; border-style: initial; border-color: initial; font-style: normal; font-weight: normal; font-family: 'trebuchet ms', arial, helvetica, sans-serif; float: none; left: auto; top: auto; line-height: normal; background-color: transparent; background-image: url(http://i.ixnp.com/images/v6.58/theme/silver/palette.gif); width: 14px; height: 12px; text-decoration: none; position: static; vertical-align: top; display: inline; visibility: visible; background-position: -1128px 0px; background-repeat: no-repeat no-repeat; " /></a>. We need infrastructure (a place to host the list) and funding for the speakers.<br /><br />Everyone's talking about creating a new world of healthcare that's more patient-centered or patient-oriented. Actually, in its fullest realization, this will be participatory medicine. (See the <a href="http://e-patients.net/page/2?s=%22participatory+medicine%22" style="color: rgb(51, 102, 153); ">many posts<img id="snap_com_shot_link_icon" class="snap_preview_icon" src="http://i.ixnp.com/images/v6.58/t.gif" style="border-top-width: 0px; border-right-width: 0px; border-bottom-width: 0px; border-left-width: 0px; padding-top: 1px; padding-right: 0px; padding-bottom: 0px; padding-left: 0px; border-top-style: solid; border-right-style: solid; border-bottom-style: solid; border-left-style: solid; border-top-color: rgb(204, 204, 204); border-right-color: rgb(204, 204, 204); border-bottom-color: rgb(204, 204, 204); border-left-color: rgb(204, 204, 204); margin-top: 0px !important; margin-right: 0px !important; margin-bottom: 0px !important; margin-left: 0px !important; max-height: 2000px; max-width: 2000px; min-width: 0px; min-height: 0px; border-style: initial; border-color: initial; font-style: normal; font-weight: normal; font-family: 'trebuchet ms', arial, helvetica, sans-serif; float: none; left: auto; top: auto; line-height: normal; background-color: transparent; background-image: url(http://i.ixnp.com/images/v6.58/theme/silver/palette.gif); width: 14px; height: 12px; text-decoration: none; position: static; vertical-align: top; display: inline; visibility: visible; background-position: -1128px 0px; background-repeat: no-repeat no-repeat; " /></a> on the e-patient blog.)<br /><br />But how can we do that if patients aren't at the table as this new world is thought out?</blockquote>The situation is getting better, but we still don't have that bureau. Nor do we have a pathway for patients to follow if they'd like to develop a career - or at least a bit of income - out of their commitment to helping improve healthcare. So I'd like to start discussing that here.<br /><br />Caveat: I have no idea where this will lead. I created my own speaking career with no plan, and sometimes it's been great and sometimes it's driven me crazy. This is not "Patient Speaking For Dummies" - this is "What can we figure out together that will be helpful?"<br /><br />I've been wanting to do this for some time, but I was finally prompted by separate notes by Twitter friends Erin Breedlove (@ErinRBreedlove) and Ilene Brenner (@IRB123). Ilene wrote:<br /><blockquote>Dave, I know someone who was injured as a professional dancer, paralyzed, and through arduous physical therapy regained her ability to walk--even dance!<br /><br />However, during the course of her recovery, she discovered pilates and has worked to help others with chronic pain, as she was helped. I think she is a true inspiration, and with her excellent stage presence and speaking ability, I know she would make a fantastic speaker. I think she could inspire the many people who suffer traumatic injuries, and who live with chronic injuries.<br /><br />Do you have any advice for her, or others like her, so they can get out there and speak to people?</blockquote>Answer: no, but let's start. Here's what I did. <i>This is no guarantee of anything. I'm just offering what I have. </i>I was a good public speaker before healthcare, and I was a high tech marketing guy so I know something about understanding your audience, understanding their concerns and what motivates them, and speaking in a way that <i>they </i>(not I, not you) will find valuable. With that as background, here's what I did, rephrased as advice to a patient starting in the same place.<br /><ul><li><b>Figure out what you have to say <i>that will be of value </i>to someone.</b> Having a good story is one thing, having a terrifying sad story is another thing, but <i>do you have anything to say that will change anyone's ability to do their job? </i> Or change their outlook on life? If you don't, you need to ask, what value would you be bringing to a conference? (You might be, but you better think about it.)<br /><br /></li><li><b>Figure out what conferences would be interested in that message. </b>Ask around: ask your doctors, your hospital administrators, etc. This can be hard work. Do it.<br /><br /></li><li><b>Develop your speaking skills.</b> If you want to be paid to speak, you have to be worth someone getting out their checkbook. Don't let this stop you from trying; you need to gain experience.<br /><br /></li><li><b>Create a website or a Facebook "Page" where you can post things.</b> I'm geekier than a lot of people so mine is fancier than most (<a href="http://www.blogger.com/www.epatientdave.com">www.epatientdave.com</a>) but yours doesn't have to be. Facebook is a lot easier. It may be seen as less professional, but it's a place to start.<br /><br /></li><li><b>Learn to be competent at PowerPoint or Prezi.com or Apple's Keynote,</b> the most popular presentation software. In later posts I'll discuss this more, if you want.<br /><br /></li><li><b>Expect to be paid little or nothing at first,</b> until you've proven your value.<br /><br /></li><li>When you want to get serious, <b>write a book.</b> It doesn't have to be fancy, it can just be an e-book or a PDF, but you have to be able to say "Author of ...."</li></ul>That's it for now - I know it's incomplete - more later. Discuss. Ask questions. To get updates, subscribe to this blog (top right).</div><div><br /></div><div>p.s. We still need that speaker's bureau! It's a lot of administrative minutiae. I'd love it if some right-minded agency would take this on. (Or one of you who's willing to do the work, if you're <i>good </i>at minutiae.)</div>Unknownnoreply@blogger.com5tag:blogger.com,1999:blog-2020989200831574035.post-74071043289784562732011-01-22T19:01:00.005-05:002011-01-22T21:43:21.267-05:00The King's Speech: yes.Yes, thumbs up. Yes, go see it if you're at all interested in -<div><ul><li>History</li><li>Leadership</li><li>Courage</li><li>Standing up to a challenge</li><li>Great stories.</li></ul><div>It's one of those rare movies where the audience applauds - especially interesting since it's been in theaters for nine weeks now. And it's one of the rare ones on <a href="http://movies.yahoo.com/showtimes-tickets/movies/1810124453-movie/">Yahoo Movies</a> where both the critics and viewers rate it A. <a href="http://rogerebert.suntimes.com/apps/pbcs.dll/article?AID=/20101215/REVIEWS/101219985">Roger Ebert's review</a>, as usual, matches my view.</div><div>On a personal note, I was strangely moved by Colin Firth's portrayal of the parallel challenges "Bertie" faced: stammering, and being thrust to the throne as his country approached war. He compellingly conveyed both feelings: "I don't know how to do this" and "I know I must." I was moved to tears by the portrayal, credible and not overdone, of courage and backbone in the face of fear and duty.</div></div>Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-2020989200831574035.post-498306344841283322011-01-17T18:09:00.009-05:002011-01-17T18:32:06.420-05:00Have you heard Martin Luther King's final speech - the whole thing?<iframe src="http://player.vimeo.com/video/3816635?byline=0" width="465" height="372" frameborder="0"></iframe><p><sup><i>Delivered by Martin Luther King, Jr 3 April 1968, Mason Temple (Church of God in Christ Headquarters), Memphis, Tennessee. It is ripped from a DVD from the series Great Speeches, volume 6th, published by EVG (Educational Video Group). To be watched for educational purposes only.</i></sup></p><p>Everyone's heard the final words of Dr. King's last speech - "I've been to the mountaintop," "I may not get [to the promised land] with you" - but do you know what Dr. King was talking about that day, the day before he was killed?<br /><br />I was 18, about to leave high school and go to college in Boston. My head was about to get turned around seriously, but from my comfortable home in the Twin Cities suburbs I had no idea what all these protestors were upset about.<br /><br />I didn't recall the circumstances that day in Memphis, but this full length version of the speech starts with a narrator's description. Then listen to King's extraordinary oration, his call to his followers to keep the faith: "Only when it is dark enough can you see the stars"; "A man can't ride your back unless it is bent"; his retelling of being stabbed by a black woman in 1958, and why he's glad he didn't die that day - the things that happened every year since then.<br /><br />The people King stood for were being firehosed to the ground, Maced, attacked by police dogs, for their peaceful assembly to protest segregation; and he lists an amazing array of companies to boycott because they wouldn't stand up to change it. Yet he preached non-violence, no matter what. This is a great orator, with a deep passion for the rightness of his cause.<br /><br /><i>The speech ends around 21:10; the video continues with the start of another track from the DVD.</i></p>e-Patient Davehttp://www.blogger.com/profile/10346452642450264511noreply@blogger.com0tag:blogger.com,1999:blog-2020989200831574035.post-62485390649826132802011-01-09T18:52:00.013-05:002011-01-09T19:19:18.558-05:00Four year old drummer Howard WongHere's the weekend's most fun discovery. My Uncle Sandy sent this - four year old Howard Wong. Watch this - around 2:15 we start to see a future rock 'n' roll monster:–)<br /><br /><object width="464" height="286"><param name="movie" value="http://www.youtube.com/v/aJG9Tol1a0U?fs=1&hl=en_US&rel=0"></param><param name="allowFullScreen" value="true"></param><param name="allowscriptaccess" value="always"></param><embed src="http://www.youtube.com/v/aJG9Tol1a0U?fs=1&hl=en_US&rel=0" type="application/x-shockwave-flash" allowscriptaccess="always" allowfullscreen="true" width="464" height="286"></embed></object><br /><br />I dug on the internet (imagine that) and found this one at age 3, a bit less sophisticated (of all things):<br /><br /><object width="464" height="373"><param name="movie" value="http://www.youtube.com/v/Sofv99I9VQQ?fs=1&hl=en_US&rel=0"></param><param name="allowFullScreen" value="true"></param><param name="allowscriptaccess" value="always"></param><embed src="http://www.youtube.com/v/Sofv99I9VQQ?fs=1&hl=en_US&rel=0" type="application/x-shockwave-flash" allowscriptaccess="always" allowfullscreen="true" width="464" height="373"></embed></object><br /><br />And way back at 23 months - a bit tentative, but he sure gets it:<br /><br /><object width="464" height="373"><param name="movie" value="http://www.youtube.com/v/zgTwQfpgcPU?fs=1&hl=en_US&rel=0"></param><param name="allowFullScreen" value="true"></param><param name="allowscriptaccess" value="always"></param><embed src="http://www.youtube.com/v/zgTwQfpgcPU?fs=1&hl=en_US&rel=0" type="application/x-shockwave-flash" allowscriptaccess="always" allowfullscreen="true" width="464" height="373"></embed></object><br /><br />Isn't it fun to see someone discovering what they were put on this earth to do?Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-2020989200831574035.post-51469491693623838542011-01-05T11:24:00.017-05:002011-01-07T20:07:18.646-05:00Defying Gravity: an artist hits a new level<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjiJ9nolamcwFHrt-Hq_3SUZSCOpkRJ6v7OLNVMBUA9FHhz20IUNBGxil7ijaasR24UcswU1L7hYXhWkSKTzrvgBMwVs7cmL5ru0yVEHS0oDh56rPNLzO3yxQTknIokTaROQO1xIVU5TBo/s1600/Suede+show+Jan+1+2011+%25281%2529.JPG"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjiJ9nolamcwFHrt-Hq_3SUZSCOpkRJ6v7OLNVMBUA9FHhz20IUNBGxil7ijaasR24UcswU1L7hYXhWkSKTzrvgBMwVs7cmL5ru0yVEHS0oDh56rPNLzO3yxQTknIokTaROQO1xIVU5TBo/s320/Suede+show+Jan+1+2011+%25281%2529.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5559615361786523602" /></a><div>I've written before about my sister <a href="http://suedewave.com/">Suede</a>, a professional jazz singer who lives on Cape Cod. On January 1 in Provincetown she delivered her annual New Year's show. </div><div>This year there was a big difference: she'd had significant abdominal surgery 11 days earlier, and none of us knew whether she'd be able to sing at all.</div><div>But she did, and she blew us away. Still recovering from deep incisions through four layers of muscle wall, she didn't have the customary powerful vocal mechanism that singers learn to use - and hers is stronger than most. But <i>the artist</i> was still there, and she pulled together everything she did have, and she performed. Man, did she perform.</div><div><i>Defying Gravity</i>, from Wicked, starts: "Something has changed within me - something is not the same." When she sang it this night, there was new meaning; we got to see who the artist is when the usual palette isn't there. And a different kind of power emerged: authentic, vulnerable, sometimes softer. Yet there was no sign of weakness or compromise; before her last song she announced she'd had the surgery, and there were gasps and murmurs.</div><div>And the show she found inside her was newly excellent. There were two standing ovations <i>within </i>the show, before we even got to encore time. In 20+ years of seeing her perform I've never seen that. Yes, this was mastery; this showed a layer of the performer we'd never seen before.</div><div>In the end, for her second encore, she pulled out her eternal crowd-pleaser, Sister, from The Color Purple. Including trumpet solo. (Hear the full song on her <a href="http://suedewave.com/listen.htm">sample tracks</a> page.)</div><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiWbuj2X7F5QmG3L4DJIgYThYVLcUHNPMBuSo6RhICZf7-BPiEpSej9H6sCwIKHSw7f5z5xC_jkI57WYfMwd9NTbXf4EwRWZWgFgFPAHuUZhlZ4HMYu3SESwifQT1UEw0c3cRtW3FxQV7Q/s1600/Suede+show+Jan+1+2011+-+trumpet.JPG"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiWbuj2X7F5QmG3L4DJIgYThYVLcUHNPMBuSo6RhICZf7-BPiEpSej9H6sCwIKHSw7f5z5xC_jkI57WYfMwd9NTbXf4EwRWZWgFgFPAHuUZhlZ4HMYu3SESwifQT1UEw0c3cRtW3FxQV7Q/s320/Suede+show+Jan+1+2011+-+trumpet.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5558751644352220530" /></a><div>Unbelievable. As a chorus singer myself, I have an inkling of what it must have taken to achieve that breath control with that sutured abdomen.</div><div>Later she said it was quite something, confronting her own mortality. (Don't I know it!) Her surgery was more complicated than planned; the surgeon discovered things were much worse than expected, and the recovery was difficult. She went right home to bed after this show, and her recovery is continuing well.</div><div>Yeah, I'm proud of my sister. But more than that, I'm in awe. Because really, two days earlier we all didn't know if the show would even be possible. And she pulled together a masterpiece.</div><div>Her next show is in Annapolis on January 15, then Ogunquit, Maine on Valentine's weekend. Ticket info on her <a href="http://suedewave.com/upcoming.cfm">schedule page</a>. Here's hoping that future shows include more of this newly discovered gem side of her - the softer side of Suede.</div><div><br /></div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-2020989200831574035.post-67176333985745339052010-11-19T18:10:00.006-05:002010-11-19T18:32:59.848-05:00Laurel & Hardy meet Santana: a mashupIn my speeches about transforming healthcare I sometimes speak about mashups: combining several things that were created without knowledge of each other, creating something new. One example is satellite navigation systems in our cars: when those GPS (global positioning) satellites were shot up in the air, nobody had the idea of combining their data with street maps and combining <span style="font-style: italic;">that</span> with way-finding software, to help us get from wherever-we-are to wherever-we-want-to-be. Mashups are one of the key methods of improving the value of things, especially on the internet.<br /><br />In my talks I say that I can't wait to see what mashups will do for healthcare - but it all depends on the ability to move data between systems, so smart innovators can add value to it. If the data's in silos, mashups can't happen.<br /><br />Well, there are other kinds of mashups. Here's one, courtesy of fellow kidney cancer patient and ACOR member Richard Catlett, via his Facebook page: Laurel and Hardy meet Santana - <i>clearly</i> two performances that were never destined to meet. Except on the internet. (Email subscribers, if you can't see the video, <a href="http://patientdave.blogspot.com/2010/11/laurel-hardy-meet-santana-mashup.html">click here</a> to come online and view it.)<br /><br /><object width="480" height="385"><param name="movie" value="http://www.youtube.com/v/l6O9FB90kAU?fs=1&hl=en_US&rel=0"></param><param name="allowFullScreen" value="true"></param><param name="allowscriptaccess" value="always"></param><embed src="http://www.youtube.com/v/l6O9FB90kAU?fs=1&hl=en_US&rel=0" type="application/x-shockwave-flash" allowscriptaccess="always" allowfullscreen="true" width="480" height="385"></embed></object><br /><br />p.s. This is my personal blog about healthcare issues. My business website and blog is <a href="http://epatientdave.com">ePatientDave.com</a>.Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-2020989200831574035.post-30227575040750568612010-10-05T22:39:00.001-04:002010-10-05T23:07:11.591-04:00US Military Pursues Patient EngagementI had an amazing experience last Thursday. I encountered some of the smartest, fastest-thinking, most motivated healthcare transformation thinkers I've ever seen. The ideas were flying so fast it was like transformation popcorn. And this was in an organization I'd never heard discussed as health leaders: a U.S. Army "Physician Champions" meeting in Boston.<br /><br />The people I met with have a particularly passionate commitment to effective care: having chosen the military themselves (not the world's best working conditions), they're distinctively committed to their patients. They have a long-running EMR system (electronic medical record), so that any "doc" who encounters a patient can see what previous providers have entered. And because of frontline military circumstances (at the front, a medic is the one you call "doc"), the records are used by all tiers of providers. In these conditions the value of accurate information is acutely apparent - as are the challenges of system usability and workflow.<br /><br />The event leaders who invited me to speak were as passionate about patient engagement as anyone I've met anywhere. I spoke about participatory medicine, and heard discussions of real-world workflow issues and best practices for working with the system to get the job done. It was concrete and practical.<br /><br />I had a strong sense that U.S. hospitals will have lots of meetings like this in the next few years as they implement EMRs.<br /><br />I wondered why in all our civilian discussions of EMR I haven't heard of this group of change leaders. Sure, I've heard about the DOD's long-standing use of their medical record, and I know about the VA's system (which is not the same as DOD's). But I had no idea there was a group aggressively advocating for <b>patient engagement </b>in the military.<br /><br />And to me that makes a ton of sense, because for the most part, when soldiers leave the service their medical record will no longer be visible to their new providers. They'll <b>need </b>to be engaged in their care.<br /><br />My gratitude to Dr Bob Walker from the Europe Army Medical Command in Heidelberg and his team for introducing me to this special operation. Great people with an inspiring passion.<span style="font-size:14px;"><br /></span>e-Patient Davehttp://www.blogger.com/profile/11608258246509102466noreply@blogger.com2tag:blogger.com,1999:blog-2020989200831574035.post-6765942333804697252010-10-04T21:32:00.004-04:002010-10-04T22:09:28.950-04:00Vigil for Tyler Clementi and gay teen suicidesLast month Rutgers freshman Tyler Clementi was secretly observed, via webcam, in a sexual encounter with another man. The encounter was streamed over the internet and tweeted by his college roommate. On September 22 Tyler killed himself. (<a href="http://en.wikipedia.org/wiki/Suicide_of_Tyler_Clementi">Wikipedia</a>)<br /><br />Readers of my book know that a powerful force in my cancer story was my sister Suede (<a href="http://suedewave.com/">website</a>), a jazz and blues singer based in the Provincetown, Massachusetts area with a profound respect for human. Last Friday she participated in an impromptu vigil for Tyler and the four other gay teens in the U.S. who reportedly killed themselves in September.<br /><br />Here's an informal video of the vigil. Suede is briefly seen in the beginning, as she sings John Calvi's "The Ones Who Aren't Here," from her first album. The song was written about and recorded during the worst of the AIDS epidemic. The quality's not great - Suede was standing on a park bench, playing through a battery powered amp - but the message is authentic. The speaker is Suede's friend Bradley, who organized the gathering.<br /><br /><object height="340" width="560"><param name="movie" value="http://www.youtube.com/v/8-02QspfZNI?fs=1&hl=en_US&rel=0&border=1"><param name="allowFullScreen" value="true"><param name="allowscriptaccess" value="always"><embed src="http://www.youtube.com/v/8-02QspfZNI?fs=1&hl=en_US&rel=0&border=1" type="application/x-shockwave-flash" allowscriptaccess="always" allowfullscreen="true" height="340" width="560"></embed></object><br /><br />(Email subscribers, if you can't see the video, <a href="http://patientdave.blogspot.com/2010/10/vigil-for-tyler-clementi-and-gay-teen.html">click here</a>.)<br /><br />I ask that we honor humanity in all its diversity and variation, and that we teach our youngsters, even rambunctious teens, to do the same. This is no joke.Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-2020989200831574035.post-15326422166237079322010-09-11T08:19:00.002-04:002010-09-11T08:33:08.955-04:00MITSS seeks HOPE Award NominationsDo you know someone, patient or professional, who's been involved with medical error and has responded to it in a powerful, productive way? Please nominate them for this award.<br /><br />MITSS is a tiny, wonderful, much-needed organization that does good work in an important area we hardly ever hear about: they provide services for people traumatized by medical error. And that includes both the patient/family part of it, and the clinicians who made the mistake. I first <a href="http://e-patients.net/archives/2009/11/mitss-much-needed-support-after-medical-errors.html">wrote about them</a> last fall on e-patients.net, then attended their annual fundraising dinner. At this year's dinner, November 4, I have the honor of delivering the opening remarks.<br /><br />Nominees are open, through 9/15, for their annual HOPE award. I lifted this from Paul Levy's blog:<br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://1.bp.blogspot.com/_ab2e8HVM5TU/TIdClvLVBpI/AAAAAAAADL8/nE-VreAQJCc/s1600/HOPEawardcompress.jpg"><img style="float: left; margin: 0pt 10px 10px 0pt; cursor: pointer; width: 134px; height: 200px;" src="http://1.bp.blogspot.com/_ab2e8HVM5TU/TIdClvLVBpI/AAAAAAAADL8/nE-VreAQJCc/s200/HOPEawardcompress.jpg" alt="" id="BLOGGER_PHOTO_ID_5514449484825036434" border="0" /></a><span style="font-weight: bold;">MITSS HOPE Award Nomination Deadline -- September 15, 2010</span><br /><br />The deadline for sending in your nomination for the 2010 MITSS HOPE Award is fast approaching. Take the time to nominate an individual, organization, department, or group that is doing great work aligned with the MITSS mission of Supporting Healing and Restoring Hope to patients, families, and clinicians impacted by adverse medical events.<br /><br />Along with the national and international recognition that this prestigious award affords, the winner will receive a $5,000 cash prize that has been provided by the award sponsor, rL Solutions.<br /><br />Go <a href="http://www.blogger.com/www.mitsshopeaward.org">here</a> for award criteria, an online nomination form, award history, past winners, and more! Nominating someone is easy, and submissions are done entirely online. Remember, too, that self-nominations are acceptable. Contact Winnie Tobin at (617) 232-0090 if you have any questions.<br /><br />ABOUT MITSS: Medically Induced Trauma Support Services (MITSS), Inc. is a non-profit 501(c)(3) organization headquartered in Chestnut Hill, MA, whose mission is "To Support Healing and Restore Hope" to patients, families, and clinicians whose lives have impacted by medical errors and adverse medical events.<br /><div style="clear: both;"></div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-2020989200831574035.post-6664628510614973592010-08-30T07:00:00.000-04:002010-08-29T15:29:31.951-04:00My review of Elizabeth Cohen's book "The Empowered Patient"<a href="http://www.amazon.com/Empowered-Patient-Diagnosis-Cheapest-Insurance/dp/0345513746/ref=cm_cr_pr_product_top"><img style="float: left; margin: 0pt 10px 10px 0pt; cursor: pointer; width: 161px; height: 230px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhyQe7IMjXZnSbQjekKvnVpEWHtWxZodHwvLvGqkztwGTd1cQ9KjFckMbnVufdMVTP95mHZ_dieW6rDcjLLWeNDGgVan4Npff38AYe-CMjud2BueaNmkAW_KqgaErh_63W4voXt6VY7fOYc/s400/Cohen+Book+Cover.jpg" alt="" id="BLOGGER_PHOTO_ID_5510915346473874194" border="0" /></a>This month CNN Senior Medical Correspondent Elizabeth Cohen released her first book, The Empowered Patient: How to Get the Right Diagnosis, Buy the Cheapest Drugs, Beat Your Insurance Company, and Get the Best Medical Care Every Time. I got an advance review copy, and it's taken me this long to figure out how to express my thoughts. I just posted this review on Amazon.<br />_______<br /><br />I've always been an empowered patient, so I didn't need to be sold on the concept. I'm a cancer-beating patient blogger, I'm co-chair of a medical society about doctor-patient partnerships, and I wrote my own book. So my question was, what does this book bring that's new?<br /><br />What it brings is convincing stories, clear explanations, and concrete how-to's. It's short, comprehensive, and convincing. I don't see how you can NOT read it if you're responsible for someone's care, including your own. It awakens you to possibilities and risks, leaving you aware and enabled.<br /><br />(Disclosure: Cohen wrote a quote for the jacket of my book, which is selling a million times slower than hers. But her view is different from mine. I've worked for weeks figuring out how to express the differences here.)<br /><br />I'll start with the author's challenge, then how she handles it, then my objections.<br /><br />The first big challenge for an author in this space is that *people tend not to care* about quality until trouble hits. And when it does, there's an instinct to not rock the boat: people want to stay put, to believe they're getting the best care possible. It's not rational, but I've seen it repeatedly: people are loathe to step out of the boat they're in, especially in troubled waters.<br /><br />It's hard to hear that care might fall short, but it can. And there are many causes: human fraillties, lagging technology, information overload, even business ethics.<br /><br />And here's the author's dilemma: the better you prove this with story after story, the more readers might feel powerless and turn away.<br /><br />So how do you reach people?<br /><br />This is where Cohen's mass media skills come in. She knows how to tell a story concisely, dip into the underlying reasons, and come back up with some concrete "Here's what to do's." There's an art to this: her own stories about her baby and her mother sometimes brought me to tears, but I wasn't turned away as I sometimes am. I was left feeling *this stuff matters*, and patients can help. By wising up, thinking for themselves, and speaking up.<br /><br />Objections: if Amazon had a 100-point scale I'd give it a 95, not 100. First, a stylistic nit: it's obviously written by a TV person. Time after time she injects, "Coming up, I'll tell you how you can xyz"; I could almost hear "...right after this message." But people who think "She can't be serious, she's on TV" are wrong: every one of her anecdotes rings true, based on the many people I've met at conferences, and almost all her "What you can do's" are spot-on.<br /><br />I agree with Mack90's comment that dot-gov sites are not quite as valuable or perfect as the book suggests: they can lag behind or be editorially skewed, no guarantee of "bestness." I've seen plenty of outdated information about my own disease (kidney cancer) on sites that match her recommendations, including sites with seals such as HON. But I don't feel as strongly about this as Mack90 does.<br /><br />Finally, I object pretty strenuously to the title of the opening chapter: "How to be a `bad' patient." I'm clear that Cohen's intent (as she said yesterday in the New York Times) was to reach people where they are - speaking into the mindset of the mass market she talks to professionally, where many people feel it's not good (or even safe) to question one's doctor. I get the point, but I would have preferred to word it "It's *OK* to be a `bad' patient." In my view, "how to be bad" is a rough start for a book about empowerment.<br /><br />But that brings me back to the top: this book brings mass-market communication skills to an area where many of us have worked hard to wake people up. Our books have contained much more information from different angles, but this could be the breakthrough that opens millions of minds.e-Patient Davehttp://www.blogger.com/profile/10346452642450264511noreply@blogger.com1tag:blogger.com,1999:blog-2020989200831574035.post-4478068359625383382010-08-29T11:24:00.003-04:002010-08-29T15:13:06.008-04:00An interlude for laughter, the best medicineI used laughter when facing my cancer, then put it in the title of my book.<br /><br />This is from Uncle Sandy in Atlanta. Get ready.<br /><br /><object width="464" height="378"><param name="movie" value="http://www.youtube.com/v/f309fSTWYo4?fs=1&hl=en_US&rel=0&border=1"></param><param name="allowFullScreen" value="true"></param><param name="allowscriptaccess" value="always"></param><embed src="http://www.youtube.com/v/f309fSTWYo4?fs=1&hl=en_US&rel=0&border=1" type="application/x-shockwave-flash" allowscriptaccess="always" allowfullscreen="true" width="464" height="378"></embed></object><br /><br />(Email subscribers, if you can't see the video, click the headline to view it online.)e-Patient Davehttp://www.blogger.com/profile/10346452642450264511noreply@blogger.com3tag:blogger.com,1999:blog-2020989200831574035.post-19522023577501328122010-08-28T12:03:00.003-04:002010-08-28T12:40:33.673-04:00"Compliance: It's Not Just for Patients Anymore."I'm in a patient safety workshop in Boston today, about engaging minorities in safer care. We just saw a video about safety awareness, encouraging patients to realize what a good role they can play in helping clinicians (doctors and nurses) get everything right. (Long story short, there are many many ways that things can and do go wrong - some complicated, some simple.)<br /><br />When people talk about making healthcare more effective, "compliance" often comes up. It's usually about whether you and I take our pills, improve our diet, etc. Patient compliance is a hot topic on blogs: Google shows <a href="http://www.google.com/search?q=%22patient%20compliance%22&tbs=blg:1">93,000 blog posts</a>, and 9,000 <a href="http://www.google.com/search?q=%22patient+compliance%22&hl=en&tbs=blg:1,qdr:y">in the past year</a>.<br /><br />But the video made a thought come up: holy cow, a lot of healthcare quality issues are because <span style="font-style: italic;">clinicians </span>forget to fulfill <span style="font-style: italic;">their </span>part of the plan. Ironic! But fault-finding finger-pointing doesn't produce behavior change as well as inspiration does - calling forth what people know to be the best in themselves. Here's a draft of a message we might want to spread - feel free to share:<br /><span style="font-weight: bold;"></span><blockquote><span style="font-weight: bold;">"Compliance: It's Not Just for Patients Anymore."</span><br /><br />We all know about patient compliance: whether patients follow our instructions to accomplish good care. When compliance falls short, our profession is undermined. Care suffers, and our efforts are frustrated.<br /><br />The same is true when <span style="font-style: italic;">we </span>don't comply with <span style="font-style: italic;">our </span>part. Whether it's hand washing or the Five Rights of administering medications, any shortfall cheats the profession as well as the patient. And perhaps our diligence - or lack of it - even rubs off on patients.<br /><br />Compliance isn't just for patients anymore. Let's not cut corners. Let's set a great example for every patient, and stick to the plan.<br /><br /><span style="font-style: italic;"><sup>This text authored by "e-Patient Dave" deBronkart.</sup></span><sup> <span style="font-style: italic;">May be posted & shared freely with this attribution intact (Creative Commons Share-Alike 3.0)</span></sup><br /></blockquote><br /><span style="font-style: italic;">Additional resources:</span><br /><ul><li>The safety awareness video is in <a href="http://e-patients.net/archives/2010/08/are-you-safe-patient-safety-awareness-video.html">this e-patients.net post</a>.</li><li>MITSS, the sponsor of this workshop, is <a href="http://mitss.org">here</a>.</li><li>The "five rights of medication administration" are:<br /><ul><li>The right patient (this is why they constantly ask your name and date of birth)</li><li>The right drug (medications too often get mixed up)</li><li>The right dose (Dennis Quaid's newborn twins famously almost died because two bottles of medication looked too similar though one was 1,000 times stronger)</li><li>The right time (4x/day, before meals, etc)</li><li>The right route (pill vs IV, etc)</li></ul><br /></li></ul>e-Patient Davehttp://www.blogger.com/profile/10346452642450264511noreply@blogger.com7tag:blogger.com,1999:blog-2020989200831574035.post-75958131020772619592010-08-13T12:03:00.006-04:002010-08-13T15:18:02.129-04:00Are you happy about why you're here? Are you free to be?TED talk by Elizabeth Gilbert. Love this quote:<br /><br />"Is it rational, is it logical, that anybody should be expected to be afraid of the work that they feel they were put on this earth to do?"<br /><br /><object height="326" width="446"><param name="movie" value="http://video.ted.com/assets/player/swf/EmbedPlayer.swf"><param name="allowFullScreen" value="true"><param name="allowScriptAccess" value="always"><param name="wmode" value="transparent"><param name="bgColor" value="#ffffff"> <param name="flashvars" value="vu=http://video.ted.com/talks/dynamic/ElizabethGilbert_2009-medium.flv&su=http://images.ted.com/images/ted/tedindex/embed-posters/ElizabethGilbert_2009.embed_thumbnail.jpg&vw=432&vh=240&ap=0&ti=453&introDuration=15330&adDuration=4000&postAdDuration=830&adKeys=talk=elizabeth_gilbert_on_genius;year=2009;theme=speaking_at_ted2009;theme=the_creative_spark;theme=words_about_words;event=TED2009;&preAdTag=tconf.ted/embed;tile=1;sz=512x288;"><embed src="http://video.ted.com/assets/player/swf/EmbedPlayer.swf" pluginspace="http://www.macromedia.com/go/getflashplayer" type="application/x-shockwave-flash" wmode="transparent" bgcolor="#ffffff" allowfullscreen="true" allowscriptaccess="always" flashvars="vu=http://video.ted.com/talks/dynamic/ElizabethGilbert_2009-medium.flv&su=http://images.ted.com/images/ted/tedindex/embed-posters/ElizabethGilbert_2009.embed_thumbnail.jpg&vw=432&vh=240&ap=0&ti=453&introDuration=15330&adDuration=4000&postAdDuration=830&adKeys=talk=elizabeth_gilbert_on_genius;year=2009;theme=speaking_at_ted2009;theme=the_creative_spark;theme=words_about_words;event=TED2009;" height="326" width="446"></embed></object><br /><br />I'm posting it because the work I'm doing now is so fabulous, such a self-expression, that I get what she means. As it says <a href="http://epatientdave.com/about-dave/">on my business website</a>, “This is the first time in my life I’ve felt I have a calling,” says Dave, “something I can’t get away from: it’s what I need to do. I’ve had plenty of fulfilling jobs in a great career, but not a calling. This is it.” And I think everyone should be on the lookout for what calls to them - like the muse she describes that flew into Tom Waits's head while he was driving, or the one that pulled the poet home to grab a pencil and pull that verse out of the air. Backwards, if necessary, as it tried to get away.<br /><br />I <span style="font-style: italic;">know </span>the feeling described in this talk, of a message coming <span style="font-style: italic;">through </span>me, in a way that I just grab as it goes past. And when I speak, I just say what apparently is waiting to be said.<br /><br />I'm going to watch this over and over. Thanks for the support you all give me, and special thanks to high school classmate Susan Alnes for steering me to this.e-Patient Davehttp://www.blogger.com/profile/10346452642450264511noreply@blogger.com2tag:blogger.com,1999:blog-2020989200831574035.post-80394234248060176462010-08-04T21:11:00.006-04:002010-08-07T00:39:48.737-04:00What's new in the new life of e-Patient Dave<div style="text-align: right;"><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEglQp2lHbJsy29MbO_ydh8mrY0RGgqhVFEy9TduA9Ij5_3CeA_MYh68EDPyenzLfdd-jubxgMSH6PLznUMKFxa3NxkreEYblZZHbEhyq6-BAgwFtm9R4qFW4hd9mU8Ed8p6FSX3vv1b5OgT/s1600/LaughSing+cover+final.jpg"><img style="float: right; margin: 0pt 10px 10px 0pt; cursor: pointer; width: 179px; height: 265px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEglQp2lHbJsy29MbO_ydh8mrY0RGgqhVFEy9TduA9Ij5_3CeA_MYh68EDPyenzLfdd-jubxgMSH6PLznUMKFxa3NxkreEYblZZHbEhyq6-BAgwFtm9R4qFW4hd9mU8Ed8p6FSX3vv1b5OgT/s400/LaughSing+cover+final.jpg" alt="" id="BLOGGER_PHOTO_ID_5501731875950223298" border="0" /></a></div>A phone call today made me realize it's been ages since I've updated loyal readers with what's going on. It's been a busy and wonderful time. My business website is <a href="http://epatientdave.com/">ePatientDave.com</a>, with pages for various goings-on:<br /><ul><li>The big news is that my book was released a month ago: <span style="font-style: italic;">Laugh, Sing, and Eat Like a Pig: How an empowered patient beat Stage IV cancer (and what healthcare can learn from it).</span><ul><li>Here's <a href="http://www.amazon.com/Laugh-Sing-Eat-Like-Pig/dp/0981650430">the listing on Amazon</a>, and <a href="http://www.amazon.com/Laugh-Sing-Eat-Like-Pig/product-reviews/0981650430/ref=dp_top_cm_cr_acr_txt?ie=UTF8&showViewpoints=1">reader reviews</a>. (Conference producers, visit my contact page to ask about bulk purchases.)</li><li>Here's the listing on <a href="http://www.amazon.co.uk/Laugh-Sing-Eat-Like-Pig/dp/0981650430/ref=sr_1_1">Amazon UK</a>.</li><li>Here's <a href="http://laughsingbook.com/">the book's website</a>. (At present it's a subset of my larger website; soon it will have its own.)</li><li>The <a href="http://laughsingbook.com/praise">advance praise</a> has been inspiring.</li></ul></li><br /><li>I've traveled a lot in recent months, speaking, attending policy meetings in DC, and meeting with people doing good work in healthcare. My schedule page is <a href="http://epatientdave.com/schedule/">here</a>.</li><ul><li>One of my favorites is that in October I'll be attending the fabulous <a href="http://www.tedmed.com/">TEDMED</a> conference in San Diego, serving as an analyst for the Robert Wood Johnson Foundation. These are truly wonderful people with [big] fingers in many great healthcare projects, including <a href="http://www.forces4quality.org/welcome">Aligning Forces for Quality</a> - a multiyear project that's already developing great data on how we can do healthcare better.</li></ul><br /></ul>There's more; explore <a href="http://epatientdave.com/">my website</a>, or heck, just <a href="http://www.google.com/search?q=%22e-patient+dave%22">google "e-Patient Dave."</a> :–) As I say, it's been busy and wonderful.<br /><br />I'm particularly grateful to <a href="http://klick.com/pharma">Klick Pharma</a>, my client who produced the superb short version of my long story, which <a href="http://patientdave.blogspot.com/2010/06/seven-minutes-of-engaged-patients-story.html">I posted here</a> in June. They're exquisitely skilled, they really get it about patient engagement, and they're carrying the message forward skillfully.<br /><br />Thanks to all of you who've been so supportive and encouraging - especially you who've provided paying work, to keep this "project" alive. Here's to better health for all!e-Patient Davehttp://www.blogger.com/profile/10346452642450264511noreply@blogger.com0tag:blogger.com,1999:blog-2020989200831574035.post-91118558131205456302010-07-21T09:34:00.005-04:002010-07-21T09:48:43.620-04:00Boston Globe notices my fabulous singer sister Suede! Cape Cod Jazz Festival, tonight<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiNwle8W6uboZBbUMyVy18w0AGt7mViwEeMbqppbk1uJ-yjac3Newlc1N2yC93yTlGYn-V6OzCMPN0A6Ps0G8TZneeK5YdiGCBgJvd7MlAk8fswIcdL0nKBhNh3E1ZBS-iC5_CwqoXctb_S/s1600/Globe+G+7-21-10.jpg"><img style="float: left; margin: 0pt 10px 10px 0pt; cursor: pointer; width: 350px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiNwle8W6uboZBbUMyVy18w0AGt7mViwEeMbqppbk1uJ-yjac3Newlc1N2yC93yTlGYn-V6OzCMPN0A6Ps0G8TZneeK5YdiGCBgJvd7MlAk8fswIcdL0nKBhNh3E1ZBS-iC5_CwqoXctb_S/s400/Globe+G+7-21-10.jpg" alt="" id="BLOGGER_PHOTO_ID_5496354110865170162" border="0" /></a>Long-time readers of this blog - and readers of <a href="http://laughsingbook.com/">my book</a>(!) - know that a powerful force in my disease process was my Cape Cod jazz/blues singer, Suede. A totally self-supporting independent musician for years, today she finally burst onto the pages of "g," the Boston Globe's daily magazine of entertainment and diversion.<br /><br />Writer June Wulff seems to have newly discovered my baby sister, but she totally gets it: "Watch out ... oy, we're in love with this talented lady." Couldn't have said it better myself!<br /><br />One night only, at the <a href="http://wequassett.com/jazz">Cape Cod Jazz Festival</a> in Chatham, MA.<br /><br />And it's FREE! (Usually a Suede ticket is $20-60.) FREE!e-Patient Davehttp://www.blogger.com/profile/10346452642450264511noreply@blogger.com0tag:blogger.com,1999:blog-2020989200831574035.post-29240486364674288762010-07-07T17:31:00.002-04:002010-07-07T17:48:12.350-04:00Kids are invited to say what THEY want from next-generation healthcare (free webcast)I know this is last-minute but we/they don't have many registrations. If you know a kid, age 5 to anything, who's free Thursday afternoon July 8, join this free webcast. It's from 2:00-5:00 Eastern, and it's fine to attend for part of the event.<br /><br /><span style="font-weight: bold;">The webcast series: "<a href="http://www.personcenteredhealth.org/">Person Centered Health</a>."</span><br /><br />This is a great group of people, mostly in Canada, whom I met through my primary physician, Dr. Danny Sands. Why "person centered" instead of patient centered? Because they're <span style="font-style: italic;">way </span>outside the box where most of us live; to them healthcare is not just part of good health, it's part of a good <span style="font-style: italic;">life</span>. (I gave <a href="http://patientdave.blogspot.com/2010/06/vision-of-person-centered-health.html">a brief glimpse of it</a> last month, after speaking at a Toronto meeting.)<br /><br />They run a monthly webinar that's unlike anything I've seen. It's a free live Webex event, which you can join by phone like a usual Webex. Or, if you're near a Cisco office (they own Webex), you can participate using their incredible "Telepresence" room, with life-size monitors. I participated in one of these, and it really is like being in a room with the people in other cities. It's <span style="font-style: italic;">nothing </span>like Skype video.<br /><br />In either case, you can register <a href="http://cisco-apps.cisco.com/pcgi-bin/sreg2/register/e_family.pl?&LANGUAGE=E&METHOD=W&FAMILY_CODE=547&PRIORITY_CODE=186171_3">here.</a> Now for the good stuff:<br /><br /><span style="font-weight: bold;">This session:</span><br /><br />At the last session, even these out-there thinkers felt cramped, and wondered: What if we got some kids in here and asked <span style="font-style: italic;">them </span>what they think? So at tomorrow's session, kids are invited to speak up. (I apologize for the late notice but I just realized yesterday that there's been little promotion and only two kids have registered so far.)<br /><br />Organizer Wayne Mills writes this description:<br /><blockquote><br /><span style="font-style: italic;">As you know, Person Centered Health is a journey. In the past few months we’ve had some excellent speakers give us their perspective in how to enable PCH from a policy stand point, from an operation stand point, from a patient standpoint. One critical group we have yet to hear from is the people whom will have to ensure Person Centered Health is delivered in the future. </span><br /><br /><span style="font-style: italic;">Therefore for our next session scheduled for July 8th at 2 PM Eastern time, we would like to invite young people. We would like to learn how do they see participating in their own healthcare system? Are they going to participate in the same format as we are (i.e. agree to have a wait time in their healthcare system) or are they going to create their own systems via social networking, etc? What changes would tomorrow’s leader's demand from today’s system? </span><br /> </blockquote><br />Again, register <a href="http://cisco-apps.cisco.com/pcgi-bin/sreg2/register/e_family.pl?&LANGUAGE=E&METHOD=W&FAMILY_CODE=547&PRIORITY_CODE=186171_3">here.</a> It's even okay to register and join after the session starts. What's important is participation.e-Patient Davehttp://www.blogger.com/profile/10346452642450264511noreply@blogger.com1tag:blogger.com,1999:blog-2020989200831574035.post-27477099820417204532010-07-06T14:07:00.006-04:002010-07-06T21:48:09.797-04:00I used to hate Thunderbird. Is it better now?This post is for people who've used the Mozilla Thunderbird email program, and are fairly demanding. Because I'm a demanding email user, and I'm considering Thunderbird.<br /><br />But when I've tried it I've hated it, and I wonder if it's improved. A lot.<br /><br />Background:<br /><br />The other day <a href="http://patientdave.blogspot.com/2010/07/i-need-new-email-hosting-company.html">I asked for help</a> on improving my email situation. I got great advice, and I'll be moving to Google Apps, as several suggested. Tom Iglehart, co-chair of <a href="http://cctwg.org/">CCTWG</a>, will help me with the move.<br /><br />Here's the geek part: I currently use Outlook Express, but Tom points out that if I move to an app that supports IMAP, I'll be able to view all my emails (received <span style="font-style: italic;">and </span>sent) from any device or any computer. (Why do I care? Among other things that will let my wife comb through email conversations about speaking engagements etc, which will take a big burden off my sole-proprietor plate. She's infinitely better than me at detail work.)<br /><br />The best known app that supports IMAP is Outlook. I hate it. In my experience (three times over the years) it gets full and then it starts malfunctioning, and I'm not interested in putting in the effort to become expert at managing a dysfunctional program.<br /><br />Several times I've tried using Mozilla Thunderbird instead. It was funky but okay, but there were infuriating limitations (really dumb missing features), which caused me every time to punt it and go back to Outlook, because my employer required it. Now that restriction's gone.<br /><br />So I need to know, is Thunderbird a <span style="font-style: italic;">lot </span>better than it used to be?e-Patient Davehttp://www.blogger.com/profile/10346452642450264511noreply@blogger.com0tag:blogger.com,1999:blog-2020989200831574035.post-8194483072613591242010-07-02T16:08:00.003-04:002010-07-02T16:12:49.840-04:00"Think About Your Life" patient-driven websiteI love this: a website that could ONLY have been created by cancer patients.<br /><br /><a href="http://www.thinkaboutyourlife.org/">http://www.thinkaboutyourlife.org/</a><br /><br /><blockquote>"Find empowerment: Anything you can do to feel like you are taking control of your illness and treatment will help you. Thinkaboutyourlife was developed by cancer survivors. We have used the tools on this website in our own experiences, and we hope to inspire you do the same.<br /><br />This website provides easy to use tools for each stage of the cancer journey to help you:<br /><br /><ul><li><span style="font-weight: bold;">Process your thoughts and feelings:</span><br />Elizabeth shared the "Good day, bad day" tool with her family to tell them how they could help her throughout treatment.<br /><br /></li><li><span style="font-weight: bold;">Take control and make decisions:</span><br />Amanda used her "One Page Profile" with her doctor to discuss the impact of treatment on her life.<br /><br /></li><li><span style="font-weight: bold;">Think about the "what now" and the "what next"</span><br />The "Hopes & Fears" tool helped Susan to think about the next few months of her life after treatment.</li></ul></blockquote>I learned about the site from its creator, Amanda George, who commented on last month's post about <a href="http://patientdave.blogspot.com/2010/06/vision-of-person-centered-health.html">person centered health</a>. Hot diggety. Doncha just love how the internet is letting us connect with each other and share ideas??e-Patient Davehttp://www.blogger.com/profile/10346452642450264511noreply@blogger.com0tag:blogger.com,1999:blog-2020989200831574035.post-33022151184823240682010-07-02T15:11:00.003-04:002010-07-06T21:47:47.467-04:00I need a new email hosting company. Suggestions?This one's for people who know about how to host websites etc. I need a change.<br /><br />For <a href="http://www.blogger.com/www.ePatientDave.com">www.ePatientDave.com</a> I'm using an inexpensive hosting company, GoDaddy, that has great customer service. I'm not thrilled by their using Danica Patrick as their spokesperson in a cheesy way, but I can tolerate it. They've got <span style="font-style: italic;">really </span>good customer service: competent people on the phone with little or no hold time. Their technical web interface is a mess in my view, but they're willing to do everything for you over the phone.<br /><br />I've registered my domain name with them, and my website lives on their computers. Other users have mentioned that their sites have gone down occasionally but it's working fine for me.<br /><br />What's <span style="font-style: italic;">not </span>working fine is the other service I buy from them: email hosting. The way they do it, my genuine emails look like spam or phishing to some filters - and that keeps me from reaching clients. Like, when I try to email anyone at the Mayo Clinic it gets rejected.<br /><br />Another client, potentially my biggest ever, thought I had no interest. They called before giving up, and we discovered all 5 of my responses had gone into their spam folder for the same reason.<br /><br />Here's the corker: when I called in to ask Godaddy about it, the well-meaning guy on the phone was naive enough to say, "Well, your email is legitimate - can't you tell the Mayo Clinic to change their security settings?"<br /><br />Right. Uh-huh. No, I think it's time to get rid of <span style="font-style: italic;">you</span>, Godaddy, and find a provider who understands email security issues.<br /><br />Suggestions, anyone?<br /><br />I'm willing to consider Gmail, but I don't know if it's industrial strength. Ideally I'd like a provider that lets me store virtually unlimited emails on the Web, so my staff can access them - but it's vital that I have a copy on my computer too, so I can read them offline.e-Patient Davehttp://www.blogger.com/profile/10346452642450264511noreply@blogger.com9tag:blogger.com,1999:blog-2020989200831574035.post-6624828671424980052010-06-26T22:28:00.005-04:002010-06-27T10:32:22.591-04:00Coverage of ePatient conference at the National Library of MedicineThis spring I had the thrill and honor of being invited to speak at the National Library of Medicine in Bethesda, Maryland. Why? Because they actually had a conference about e-patients.<br /><br />Yes, the U.S. National Library of Medicine, part of the National Institutes of Health, had an e-patient conference.<br /><br />And they brought all the brass. Here's the inside front cover of the current issue of <i>Medline Plus</i>, their (free) magazine: (click to enlarge)<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhOn1jM1RXxrS8qu5GzUiCmRMUseYrGKnyB9Xr0KE4QjysV0zzqua-bcaFo9ibguFIw-MiwM3tXWMFrtginHD1j16gLD5lG68QltCBp4KzvshyNjREXToLkmBRxjdA_Ps3RFVebqMaOlKY0/s1600/FNLM+Medline+Plus+2.jpg"><img style="float: left; margin: 0pt 10px 10px 0pt; cursor: pointer; width: 304px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhOn1jM1RXxrS8qu5GzUiCmRMUseYrGKnyB9Xr0KE4QjysV0zzqua-bcaFo9ibguFIw-MiwM3tXWMFrtginHD1j16gLD5lG68QltCBp4KzvshyNjREXToLkmBRxjdA_Ps3RFVebqMaOlKY0/s400/FNLM+Medline+Plus+2.jpg" alt="" id="BLOGGER_PHOTO_ID_5487275204020958434" border="0" /></a><br /><br />This was one of several times I found myself crossing paths recently with David Blumenthal. Funny, when he was a doctor at Mass. General I never saw him, but now I see him often.<br /><br />The most fun was meeting Dr. Lindberg, quoted in the article. In every speech I cite something he said that's quoted in the e-Patient White Paper, about how impossible it is for doctors to keep up with the information explosion:<br /><blockquote>"If I read two journal articles every night, at the end of a year I'd be 400 years behind."</blockquote>That's one of the most potent quotes to open people's minds to the power of activated, engaged, e-patients. Physicians are overloaded and have thousands of conditions to track; you and I only have our own conditions. They must go wide; we can go deep.<br /><br />The <i>really</i> fun thing is this: sometimes a skeptic would question Dr. Lindberg's statistic, saying "That's not really true - it's probably different today." Well, now I can say "When I had dinner with Dr. Lindberg this spring, I asked him about that. He said it is different: it's much worse now."<br /><br />Here's to e-patients - and here's to the amazing realization that these great academics are noticing!e-Patient Davehttp://www.blogger.com/profile/10346452642450264511noreply@blogger.com0tag:blogger.com,1999:blog-2020989200831574035.post-91402066488917600272010-06-26T12:56:00.007-04:002010-06-26T17:06:27.496-04:00It's my Drop Dead Date plus three years. Thppppt!<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://farm1.static.flickr.com/167/389693171_e641a84080.jpg"><img style="float: left; margin: 0pt 10px 10px 0pt; cursor: pointer; width: 446px; height: 334px;" src="http://farm1.static.flickr.com/167/389693171_e641a84080.jpg" alt="" border="0" /></a>Three years ago today was "razzberry day," aka Drop Dead Date. So, today on <a href="http://www.caringbridge.org/visit/davedebronkart/journal">my CaringBridge journal</a> I posted this picture.<br /><br />Huh?? Patience, my lovelies; all shall be revealed:<br /><br />At diagnosis on January 11, 2007 my median survival was 5.5 months, which predicted an "expiration date" of June 26. On that date all my buddies gathered at noon eastern time and blew razzberries (Bronx cheers) at Death as we zoomed past it and into the future.<br /><br />Here's an email Mom sent yesterday to my siblings:<br /><blockquote>"Hi, all - Saturday, June 26 is the 3rd anniversary of Dave's beating his "Drop Dead Date" of the average 5.5 months survival time after diagnosis of his particular brand of cancer. I personally plan to give the razzberry salute at noon, again, to commemorate the day, and invite you to join me...<br /><br />"He's at a conference in SC, home Sunday night; his book <a href="http://laughsingbook.com"><span style="font-style: italic;">Laugh, Sing, and Eat Like a Pig</span></a> is coming to Amazon SOON. I've spent the past few days doing a bit of proofing for him, and reliving the story; some tears, some giggles, lots of strong reminders of how and where we all were 3 years ago, dealing with HIS cancer, each in our own way. And the book also has much of where he's been since then... I'll (personally) make sure you each get a copy when it's published. My treat, though Dave may have had that thought already. If so, I win because I'm the mother and I said so..."<br /></blockquote>Dat's my mom - and you're my razzbuddies. Life is crazy good!e-Patient Davehttp://www.blogger.com/profile/10346452642450264511noreply@blogger.com4tag:blogger.com,1999:blog-2020989200831574035.post-67996663449697951492010-06-17T23:12:00.002-04:002010-06-17T23:14:49.659-04:00A vision of *people-centered* healthHeads-up, people - this is somethin' good.<br /><br />I was invited to speak today at a meeting on "Patient-Centered Health" sponsored by the Ontario Hospital Association. I was followed to the stage by Vaughan Glover, author of <i>Journey to Wellness</i>, a 2005 book with a terrific vision of healthcare in which patients are truly responsible for the state of healthcare.<br /><br />I hope to write more about it later, but for now just savor this quote from the back cover:<br /><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiHTBfJHEKq7_1laE-0mh0pYmP6Mx1UhkoHoEEgWtmZJlydqAOtMQAcBd9jkpogZpP0PvebhsfVw9oxop__pdjo-UdT4b4Nlj6bvVshcMTAfTT6zhDxtPnF9wVHIaqAoyzxG4v5YY70kmk/s1600/Glover+Cover001.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img style="width: 418px; height: 101px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiHTBfJHEKq7_1laE-0mh0pYmP6Mx1UhkoHoEEgWtmZJlydqAOtMQAcBd9jkpogZpP0PvebhsfVw9oxop__pdjo-UdT4b4Nlj6bvVshcMTAfTT6zhDxtPnF9wVHIaqAoyzxG4v5YY70kmk/s640/Glover+Cover001.jpg" border="0" /></a></div><br />"We, the patients, must lead the way in building the next generation of health care in our country. The change will be driven by an informed and empowered public, demanding access to what is possible rather than what a government or any other support group is willing or able to provide."<br /><br />How could I not have met this guy before?? Glad I did.e-Patient Davehttp://www.blogger.com/profile/11608258246509102466noreply@blogger.com1tag:blogger.com,1999:blog-2020989200831574035.post-86375647541838800652010-06-10T07:49:00.002-04:002010-06-10T08:21:51.521-04:00When BP spills coffeeFrom the Upright Citizens Brigade comedy site, UCBComedy.com:<br /><br /><object height="291" width="480"><param name="movie" value="http://www.ucbcomedy.com/videos/embed/23691f9f95fce8fca3b49a14619493ae"><param name="wmode" value="transparent"><embed src="http://www.ucbcomedy.com/videos/embed/23691f9f95fce8fca3b49a14619493ae" wmode="transparent" type="application/x-shockwave-flash" height="291" width="480"></embed></object><br /><br />(Thanks to Paul Levy for tweeting this.)e-Patient Davehttp://www.blogger.com/profile/10346452642450264511noreply@blogger.com0