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    Archived pages: 935 . Archive date: 2013-09.

  • Title: e-Patients
    Descriptive info: .. Society for Participatory Medicine.. e-patients.. net blog.. Journal of Participatory Medicine.. Home.. Categories.. chapter reviews.. demographics.. e-patient stories.. e-pts resources.. end of life.. ethics.. general.. hc s problem list.. JoPM.. key people.. maternity.. medical records.. net-friendly docs.. news gossip.. others e-patient stories.. patient networks.. PM Tech.. policy issues.. positive patterns.. pt/doc co-care.. pts as teachers.. reforming hc.. research issues.. shared decision making.. social media.. trends principles.. understanding statistics.. Why I joined.. Why PM.. I am an e-Patient.. Found on the Net.. About Us.. Contribute / Contact Us.. Featured.. Monday: Watch the Consumer Health IT Summit live.. Our time is here!.. e-Patient Dave.. |.. | September 15, 2013.. Your browser does not support inline frames or is currently configured not to display inline frames.. Content can be viewed at actual source page: http://www.. facebook.. com.. Tweet.. Click to visit the event s site and join the webcast.. Monday Sept.. 16 is the.. 2013 Consumer Health IT Summit.. That means we, the patients, are the focus we and our data, of course! along with the providers (doctors, nurses, practices, hospitals) who serve us.. You can watch live, online, without prior registration.. But you need Adobe Flash Player so.. be sure you have it (this page).. then.. come watch live.. !.. 9:00 a.. m.. to 1:00 p.. EDT.. Monday, Sept.. 16, 2013.. Read more about the event.. on its site.. Note: this time it s not just us data geeks (and our leaders like Todd Park and Farzad Mostashari) this time.. the Office for Civil Rights.. is involved all the way up to Leon Rodriguez, the.. director.. of OCR.. Why? Because did you know this? it s a.. Federal civil rights violation.. for a provider to deny us our health data!.. I personally have used that fact in a conversation with a provider who said I couldn t have my data.. It worked wonders.. :-) (See.. “You can ask to see or get a copy of your medical record other health information”.. on my personal site.. ).. Twitter participation:.. Apparently two different hashtags will be used.. (That s generally not a great idea but here we are.. ) They are.. #BlueButton.. and.. #NHITweek.. (The latter is according to Sherry Reynolds in the first comment below.. ) Here s.. a Twitterfall link.. to watch both links simultaneously.. The event s focus this year is.. Accelerating the Blue Button Movement.. As regular readers know,.. Blue Button.. is a combination of philosophy and technologies that boil down to this: Give us our data! Blue Button has changed a.. lot.. in the past year or two there s.. lots.. to learn about what s new and what it means for your ability to engage in your care participatory medicine.. Several SPM members will be there and even involved with the event.. Matthew Holt of Health 2.. 0 is leading an unconference in the afternoon.. Lygeia Ricciardi, head Consumerista at ONC, is in charge of the whole event.. Sherry Reynolds (@Cascadia) leads the provider side, corresponding to Lygeia on the consumer side.. Catherine Rose, who placed second in the Blue Button Developer Challenge.. I ll be giving the opening talk (15 minutes).. Ryan Witt.. Casey Quinlan.. Adrian Gropper.. Mary Anne Sterling.. Keith Boone, author of the e-Patient Rap.. SPM President-Elect Josh Seidman!.. ____Also there, unexpectedly:____________.. Dr.. Danny Sands (SPM co-founder and co-chair).. Regina Holliday.. AJ Chen.. Donna Cryer.. Phil Deering.. Mary Griskiewicz.. Ross Martin.. Sue Woods.. Lisa Raileanu.. I know there were more but I m horrible at remembering names if you were there, email me dave at epatientdave.. As Sherry points out in her comment below, there will be numerous breakout sessions (special interest groups) in the afternoon.. See the event s side (above) for details.. I ll update this with more information as it arrives, but for now, spread the word and get ready to watch!.. Read More.. 3 Comments.. Most Recent.. Flip the Flip.. @yogileana.. | September 13, 2013.. Guest blogger Natasha Gajewski participated in the Flip the Clinic meeting at the Robert Wood Johnson Foundation.. Below are her observations about the meeting and a thought you might consider.. Natasha is an e-Patient and the developer of.. Symple.. , a symptom journal for he iPhone.. She has been named a 2013 Stanford MedX ePatient scholar, TedMED Frontline scholar, one of ten Innovators to Follow by the Partners Center for Connected Health, and a member of the Startup Health Showcase at the mHealth Summit in Washington DC.. You can find her on Twitter at.. @sympleapp.. Yesterday, I enjoyed the company of some of the smartest people in healthcare.. Physicians, policy wonks, community health activists, nurses, designers, journalists, entrepreneurs, technologists and a tai chi master, all gathered at the.. Robert Wood Johnson Foundation.. to begin a conversation on.. flipping the clinic.. , a take on the.. Khan Academy.. approach to flipping the classroom.. It just so happened that earlier that week, my son s math teacher announced that she would be flipping the classroom.. ” She explained that the boys would be.. learning.. at home through video and textbook instruction, and then.. practicing.. what they learned the next day in the classroom.. This flip would give her time to work with the boys individually, as each moved through the curriculum at his own pace.. So how would we extend this metaphor to healthcare? We covered a lot of territory at RWJF, including payment reform, care delivery and the role of technology.. With sticky notes flying, we inspected the state of healthcare in America, and how we might improve things by flipping them.. As a patient myself, and as a witness to my father’s experience (he passed away last November), much of what we talked about seemed to come from 40,000 feet rather than terra firma.. As Theresa Brown, a clinical oncology nurse, suggested, patients are kind of busy being sick.. But there were some nuggets that I could hold onto.. One was John Moore s (Atelion Health) idea of scaffolding the patient towards autonomy which I think means teaching patients about their disease, how it affects their body, their treatment choices, and why they work.. Self-prescribing sounded less plausible, but collaborative titration not only made sense to me but was something I did when getting off of prednisone.. I was more skeptical of a plan to train patients into experts, but that’s due to personal bias: in my experience, once healed, people abandon their patient communities and return to their normal lives.. If John’s team can train and retain patient experts to counsel the newly diagnosed or chronically ill, he will have solved a very big problem indeed.. Rishi Desai s story of a 14 year old chronic TB patient who monitored, reported, and even suggested next steps based on her liver enzyme profile was heartening.. Formerly a pediatric infectious disease specialist, Rishi now works with Khan Academy to bring open-sourced, high-quality medical and health education content to anyone, anywhere.. Rishi described a sense of great satisfaction, even joy, at empowering this young patient to participate so deeply in her own care.. Which brings me to this final and startling nugget: joy and satisfaction are apparently in short supply amongst care providers, particularly those on the front lines.. So I find it curious that we focus so much attention on salvaging the wellbeing of the patient, when studies and the emerging crisis in primary care suggest that more attention needs to be given to improving the wellbeing of clinicians.. So here s a flip that we might consider: could patients cure clinician burnout and other problems in our healthcare system? We can only find out if we invite more patients to the conversation, a flip that is long overdue.. 6 Comments.. New #S4PM tweetchat series kicks off Saturday 9/14 at 3pm Eastern.. | September 11, 2013.. SPM is launching a tweetchat series this Saturday, Sept.. 14 at 3pm Eastern, 7pm GMT (use The World Clock [link:.. http://www.. timeanddate.. com/worldclock/converter.. html.. ] to find your time zone).. The chat will be led by Casey Quinlan, @MightyCasey; Ileana Balcu, @Yogileana; and Carla Berg, @Confluently.. We ll be hosting an #s4pm tweetchat on the 2nd and 4th Saturdays of the month, with our 2nd edition slated for Saturday, Sept.. 28 from the floor of MedicineX at Stanford, where a number of our members will be in attendance.. Our first chat on 9/14 will focus on:.. What is participatory medicine?.. How has peer-to-peer healthcare impacted you?.. We re inviting anyone interested in healthcare to join us, and to talk about how creating collaboration between doctors and patients is where real healthcare transformation happens.. If you re a member of another healthcare tweetchat community, tell your t-chat buddies to surf over to.. tchat.. io.. and plug in the hashtag #s4pm at 3pm Eastern this coming Saturday.. We want to hear from all of you!.. Can t make it? Tell us what you think participatory medicine is and how has peer-to-peer healthcare impacted you! Just use the Comment form below!.. Updated Sep 16:.. Awesome job done by Casey Quinlan this weekend with the relaunch of #s4pm tweetchat.. We had a great crowd!.. http://hashtags.. symplur.. com/.. healthcare-hashtag-transcript.. php?hashtag=s4pm fdate=09-14-.. 2013 shour=12 smin=0 tdate=09-.. 14-2013 thour=13 tmin=18 ssec=.. 00 tsec=00 img=1 nort=1 o=1.. Followed by a G+ hangout with Kathi Browne in which Casey talked about  ...   room within 15 minutes of arrival.. A nurse greets us shortly thereafter to review our medicine list and address any issues that we ve been having.. Just the other day he was coughing up a storm but seems to have gotten over it.. Should I talk to the dietician about his diet again? His weight is up and his stool seem normal but I m always anxious about his lack of interest in food.. I wonder if an RT [respiratory therapist] is available to talk a little bit about his airway clearance.. I don t want to be a bother but I sure do think the airway clearance he had in the hospital this summer was more effective.. I wish I knew what they were doing differently!.. Next up is the doctor.. Rheumatoid Arthritis Ruined Her Elbow, But Nothing Could Break Her Hope.. others' e-patient stories.. | August 16, 2013.. SPM member Kelly Young is one of the most spectacular, potent, world-changing e-patients I ve ever seen.. (See our many posts.. here about her activism.. ) Aside from all her work on.. RAWarrior.. her Foundation.. , see how she uses this case to teach.. Peer-to-peer healthcare:.. NOTE: Did you or someone you know participate in a clinical trial the past year? Please see important message below.. Research of an engaged patient rescues her elbow.. I hope you enjoy this inspiring story of a young woman’s struggle to get the best treatment for her elbow destroyed by Rheumatoid Disease (RD).. Carolyn is a brave patient who researched to find a procedure to relieve her pain and restore movement to her elbow.. She illustrates key strategies for e-patients battling any tenacious or evil disease like RD.. Resources for health literacy.. Kathy Kastner.. Guest blogger Kathy Kastner gives us an overview of the health literacy resources on the Internet.. It is an important topic – how can patients be engaged and participatory if they don’t understand what they are told? Kathy Kastner is Blogger and Curator for.. bestendings.. com.. ability4life.. Health literacy fascinates me because it s so much more than writing for a specific grade (3,5,8 )level.. It s context and interpretation, layout and font size (in print), and tone and body language (in person).. The American Medical Association has a terrific.. video.. , You can t tell by looking.. ama-assn.. org//ama/pub/about-ama/ama-foundation/our-programs/public-health/health-literacy-program/health-literacy-video.. page.. (alert Facebook Group: But you don t look sick ).. Previous Entries.. Welcome.. Participatory Medicine is a model of cooperative health care that seeks to achieve active involvement by patients, professionals, caregivers, and others across the continuum of care on all issues related to an individual's health.. Participatory medicine is an ethical approach to care that also holds promise to improve outcomes, reduce medical errors, increase patient satisfaction and improve the cost of care.. Join the Society.. Member Tools.. Stay Connected.. Twitter.. Subscribe to the blog via email:.. white paper.. e-Patients:.. How They Can Help Us Heal Healthcare (PDF).. English (977 kb).. Español (962 kb).. found on the net.. Peer-to-peer health care is a slow idea that will change the world.. Susannah Fox.. | 06 Aug 2013.. "The most exciting innovation of the connected health era is…people talking with each other.. " This is the essential point of a.. post.. that is garnering some great comments on my personal blog.. I weave.. Cleveland Clinic To Give Patients Full Access to Data.. Kathleen O'Malley.. | 10 Jun 2013.. Healthcare IT News.. posted a detailed story about how the Cleveland Clinic plans to roll out its new MyChart EMR to give patients complete access to their health records by the end of.. Lisanne St Onge Klute: The Power of Social Healthcare; Becoming an Empowered Patient and Surviving a Cavernous Malformation of the Brainstem.. | 05 Jun 2013.. This guest post was written by Lisanne St.. Onge Klute and originally appeared on.. The Story of iPatchman,.. a blog for e-patients with brain tumors.. It is a great example of the power of social media for helping e-patients find the best treatment.. Thanks to Akiva Zablocki, the blog's editor and founder, for bringing Lisanne's story to our attention.. Follow Lisanne's story on her Facebook page,.. That Brain Fart.. In May of last year, I found out I had a.. cavernous malformation.. in the brainstem and it was bleeding, slowly disabling me.. I was told by numerous neurosurgeons that it was inoperable.. I went online right away and looked for support.. I came across a support group where I met so many kind people, but nobody with the same condition as me, in the same location.. I did learn from them to become proactive in my health, to do more research.. Fwd: [New post] Does scientific misconduct cause patient harm? The.. | 19 Feb 2013.. Important quick update - pardon the lack of formatting - I'll try to clean it up later - ---------- Forwarded message ---------- From: Retraction Watch Date: Tue, Feb 19, 2013 at 4:22 PM Subject: [New post] Does scientific misconduct.. | 16 Aug 2013.. SPM member Kelly Young is one of the most spectacular, potent, world-changing e-patients I've ever seen.. Peer-to-peer healthcare: NOTE: Did you or someone you know participate in a clinical trial the past year? Please see important message below.. Research of an engaged patient rescues her elbow I hope you enjoy this inspiring story of a young woman’s struggle to get the best treatment for her elbow destroyed by Rheumatoid Disease (RD).. Angelina Jolie, BRCA1, Public Health, Patent Law the Empowered Patient.. | 20 May 2013.. Going public recently with her story of a prophylactic double mastectomy after testing positive for BRCA1 (a gene linked to breast cancer) via an.. op-ed piece in the New York Times.. , Angelina Jolie is clearly trying to get the message out that radical choices must sometimes be made in order to increase one's chances of survival, chances of spending more years with family and friends, and continuing to do one's work on this earth.. She is seeking to advance the public health conversation, and to empower women to make a choice that may otherwise be frowned upon, by giving her surgeon carte blanche to.. blog about her surgeries.. as well.. The questions that came to mind immediately for me when I first heard about this story (via radio talk shows as I was driving to and from meetings) included: Isn't that the gene that was patented? Isn't that test incredibly expensive and probably not accessible to most women? How is this story relevant to most women?.. When is patient data not patient data? When a patient wants his or her ICD data.. | 30 Nov 2012.. The latest news story to examine the issue of.. patient access to implantable cardiac defibrillator data.. (a variation on the theme of "gimme my damn data") is an in-depth, Page One.. Wall Street Journal.. story featuring.. members Amanda Hubbard and Hugo Campos.. They have garnered attention in the past - one example is another.. piece on Hugo on the NPR Shots blog.. about six months back.. The question posed by these individuals is simple -- May I have access to the data collected and/or generated by the medical device implanted in my body? -- but the responses to the question have been anything but.. It is important to note that not every patient in Amanda's or Hugo's shoes would want the data in as detailed a format as they are seeking to obtain, and we should not impose the values of a data-hungry.. Quantified Self.. devotee on every similarly-situated patient.. Different strokes for different folks.. The point is that is if a patient wants access to this data he or she should be able to get it.. What can a patient do with this data? For one thing: correlate activities with effects (one example given by Hugo is his correlation of having a drink of scotch with the onset of an arrhythmia -- correlated through manual recordkeeping -- which led him to give up scotch) and thereby have the ability to manage one's condition more proactively.. A patient story: HIMSS Adam Bazer on IT from a patient s perspective.. | 25 Jun 2012.. From the HIMSS Blog, Adam Bazer with a personal health story where even in a great hospitals the IT is not as connected as can be.. We wish your son Ari well, Adam!.. http://blog.. himss.. org/2012/06/25/healthcare-it-from-the-view-of-a-worried-father/.. The link inside.. recent comments.. iwebcam chat.. on.. Tweetchat on Wed March 20 about Gimme my DAM Data, Blue Button Plus and Commonwell.. Transparent pricing.. Unequal access | Stop.. Open Health Data is Here.. Welcome To The Great Data Divide!.. Better Health: Everyone s Responsibility resources for today s conference e-Patient Dave.. OpenNotes: The results are in.. GREAT news for patient engagement.. Sherry Reynolds on.. recent posts.. blog authors.. Dave deBronkart.. (538).. (242).. (73).. Gilles Frydman.. (71).. (67).. Ileana Balcu.. (32).. Jon Lebkowsky.. (27).. (18).. Dan Hoch.. (17).. Cheryl Greene.. Charlie Smith.. (14).. Jessie Gruman.. (12).. Joe Graedon.. (8).. Danny van Leeuwen.. Alan Greene.. Christine Gray.. (7).. Nancy Finn.. (6).. Daniel Z.. Sands, MD, MPH.. (5).. Sarah Greene.. (4).. Roni Zeiger.. (3).. Peter Frishauf.. Susan Woods.. (2).. Michael Millenson.. (1).. Eve Harris.. Terry Graedon.. Tom.. Jennifer.. The Journal of Participatory Medicine.. Join the Society today.. Categories.. More Categories.. Copyright 2009-2013 Society for Participatory Medicine unless otherwise stated..

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  • Title: chapter reviews | e-Patients.net
    Descriptive info: Participatory Medicine Grand Rounds.. | October 12, 2010.. This is e-Patients.. net s first opportunity to host Grand Rounds, which is a collection of some of the medical blogosphere s best writing over the last week.. We asked bloggers to look at our sister website, the peer-reviewed Journal of Participatory Medicine, and create posts inspired by or extending the articles there.. We did this not to [.. ].. Participatory Medicine around the world: the Seven Preliminary Conclusions reach India.. | September 26, 2009.. A Google alert popped up today, saying that a participatory physician in India had cited this blog..  ...   his now-famous 1995 triangle slides: the internet gives us access to information and to each other, which puts [.. The e-patient white paper: Seven Preliminary Conclusions.. | January 27, 2009.. One year ago today I finished reading e-Patients: How they can help us heal healthcare, the e-patient white paper.. It turned my head around because although I d experienced excellent care in almost all ways, it showed that I as a patient have far more to contribute than I ever would have imagined.. The people who [.. e-patients: How they can help us heal healthcare, chapter 1.. | September 18, 2008..

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  • Title: demographics | e-Patients.net
    Descriptive info: Caregivers: a celebration.. | June 20, 2013.. Becoming a caregiver seems to change people as health information consumers.. They turn up the volume on every information source.. They track down information as if it is a competitive sport.. * They don t let pay walls or office hours stand in their way.. It s akin to becoming a parent for the first time, but it s [.. How do (older, lower-income) patients learn?.. | May 2, 2013.. Rebecka Sexton of the Center For Innovation at the Carilion Clinic in Roanoke, VA, emailed a great question and I d like to share it more widely: We are working on a project here at Carilion on chronic diseases related to Population Health Management related to COPD.. I am specifically working on the education component from [.. Veteran Internet Use and Engagement With Health Information Online.. | April 8, 2013.. New analysis of the Pew Research Center s 2010 health survey results show differences among three populations: veterans of the U.. S.. military who obtain their health care within the Veterans Health Administration of the U.. Department of Veterans Affairs (VA); veterans who are outside the VA system; non-veterans.. The full article is behind the pay wall for Military Medicine, [.. Health Online 2013: survey data as vital sign.. | January 15, 2013.. Survey data is a snapshot of a population, a moment captured in numbers, like vital signs: height, weight, temperature, blood pressure, etc.. People build trend lines and watch for changes, shifting strategies as they make educated guesses about what s going on.. What s holding steady? What s spiking? What s on the decline? Just as  ...   Health at the National Library of Medicine.. | July 13, 2010.. Update: The NLM released new widgets on July 14, along with a redesigned MedlinePlus site.. (Read @eagledawg s take on these new tools, as well as her response to this post.. ) Speaking to the senior staff of the National Library of Medicine last week was like going before the best kind of murder board.. Picture it: [.. Frequently Asked (But Unanswered) Questions About E-patients.. | May 11, 2010.. As I ve written before, I love questions.. It s an honor to be handed someone s nascent idea and to help them shape it (which is what I think a question really is).. But this time I m asking for YOUR input.. These excellent questions were sent to me by Liav Hertsman and his colleagues at Tel Aviv [.. Health 2.. 0 Europe: A Moveable Feast.. | April 19, 2010.. Ernest Hemingway wrote that Paris is a moveable feast, not fixed in time or place.. I think that describes great gatherings of any kind, including great conferences, which begin before the first speaker takes the stage and don t end simply because the participants have left the building.. 0 Europe began, for me, in February, [.. Access is (almost) everything.. | December 22, 2009.. Or: Why health geeks should pay attention to internet access geeks.. The Pew Research Center s Hispanic Project and Internet Project just released an in-depth look at internet penetration across racial and ethnic categories in the U.. : Latinos Online, 2006-2008 From 2006 to 2008, internet use among Latino adults rose by 10 percentage points, from 54% to 64%.. [.. Older Entries..

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  • Title: e-patient stories | e-Patients.net
    Descriptive info: I m standing just in front of the number 1, while people are sitting along the wall behind me.. Do you see the problem? After I identify [.. SPM member Erin Moore (@EKeeleyMoore) is one heck of an activist parent.. She sees the future, she has a stake in it a kid with a chronic disease and like many of us, she s not waiting around for someone else to make it happen: she s engaged in creating the future that her son [.. (See our many posts here about her activism.. ) Aside from all her work on RAWarrior.. com and her Foundation, see how she uses this case to teach.. Peer-to-peer healthcare: NOTE: Did you or someone you know participate in a clinical [.. That is a Real Doctor.. | August 13, 2013.. Guest blogger Peggy Zuckerman tells us a story about a young competent doctor and how transparency and openness is key to giving better care.. Peggy Zuckerman never intended to be a patient advocate, not even a patient! But after her diagnosis with a tiny, scabbed-over ulcer , later determined to be metastatic kidney cancer, she became a patient.. A parent speaks: Our child s disease is OUR disease.. | July 19, 2013.. Susannah: On June 14, 2013, I attended the National Meeting on Promoting and Sustaining Collaborative Networks in Pediatrics where we discussed topics  ...   of iPatchman, a blog for e-patients with brain tumors.. Thanks to Akiva Zablocki, the blog s editor and founder, for bringing Lisanne s [.. How to be Participatory in the Face of Adversity.. | May 14, 2013.. From the lens of a patient who recently experienced major surgery, I now realize how difficult it is to be participatory when you are in pain and taking large doses of pain medication which dulls the senses and puts you in a place where you are not really thinking about anything but how to get [.. How Things Change.. | May 1, 2013.. SPM member Jody Schoger s post “Cancer: Part Two” at her blog Women with Cancer landed with a big thud on April 26.. Schoger was recently diagnosed with metastatic breast cancer.. She’s a co-founder of #bcsm (breast cancer social media), one of the highest rated Tweetchats with almost 6,000 tweets per month.. In less than two years the group has gained [.. Clinicians are from Mars, e-Patients are from Venus.. | April 11, 2013.. Are clinicians from Mars and e-Patients from Venus? My experience is e-patients and clinicians can agree that they seek best health.. Yet there is such a disconnect, such frustration, so much of the time.. Participatory medicine strives to bridge the gaps between patients, caregivers, clinicians and health care systems.. Caring about best health and getting [..

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  • Title: e-pts resources | e-Patients.net
    Descriptive info: 14 at 3pm Eastern, 7pm GMT (use The World Clock [link: http://www.. com/worldclock/converter.. html] to find your time zone).. We ll be hosting an #s4pm tweetchat on the 2nd and 4th Saturdays of the month, with our 2nd [.. This week s entrant is the EveryMove 100, a ranking of health plans across the US based on how they engage with and empower consumers to manage their own health.. (EveryMove is a health rewards based marketing and incentives company that provides opportunities to consumers to earn [.. It is an important topic – how can patients be engaged and participatory if they don’t understand what they are told? Kathy Kastner is Blogger and Curator for bestendings.. com and ability4life.. com Health literacy fascinates me because it s so much more than writing for [.. I d be 400 years behind updated, bigtime.. | August 6, 2013.. One of the most-quoted eye-opening quotes in Doc Tom Ferguson s e-Patient White Paper is this: As Donald Lindberg, director of the National Library of Medicine, explains, “If I read and memorized two medical journal articles every night, by the end of a year I’d be 400 years behind.. ” It s in a section titled Clinicians can [.. Ivan Oransky (Reuters, RetractionWatch) joins  ...   s dead.. | July 13, 2013.. In medicine, to achieve the best you need the best information.. So an essential question is, who gets to say what s best? That question took a sharp turn this week with the news that Medpedia is dead.. Medical librarian Laika Spoetnik has a strong post on the demise, including an interview with its founder, James [.. The FDA Patient Network Website Patient-Centeredness that Walks the Walk.. | May 12, 2013.. The FDA launched an impressive patient network website this month, after nearly four years of research, focus groups, usability testing and more.. The twin goals for this website are promoting the educational mission of the FDA, and promoting opportunities for patient advocacy within the FDA and earlier in the policymaking process than has been the [.. A sign of the times: thyroid cancer patient says TWO docs recommended a patient organization.. | March 30, 2013.. Well well well, dare I say the times are changing? Not long ago all we ever heard was Stay off the internet.. But a friend just said his endocrinologist and his radiologist BOTH recommended ThyCa.. org to him! (Twitter: @ThyCaInc) It s created and maintained by thyroid cancer survivors, with a long list of physicians as partners [..

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  • Title: end of life | e-Patients.net
    Descriptive info: Caregivers, please share your stories.. | May 28, 2013.. The Pew Research Center will release a new report about caregivers in June.. As we prepare, I m looking for stories to share with reporters so they can better understand the context for our data.. If you have experience caring for a family member, a friend, or a neighbor, either now or in the past, please consider writing [.. Engage with Grace.. | November 22, 2012.. A guest post from the Engage with Grace team One of our favorite things we ever heard Steve Jobs say is… ‘If you live each day as if it was your last, someday you ll most certainly be right.. ’ We love it for three reasons: It reminds all of us that living with intention is one [.. Caregivers Online.. | July 12, 2012.. A new Pew Internet/California HealthCare Foundation report is out today: Family Caregivers Online.. I thought I d give some background on why we did the study and a few key take-aways.. Caregivers are alpha geeks of health care 30% of U.. adults are currently caring for a loved one and it cuts across most demographic groups.. HIT Journalist becomes patient advocate after seeing the danger of uncoordinated care and poorly designed workflows.. | May 18, 2012.. Neil Versel, a HIT journalist, relates a very touching story of his father 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 s father had a rare poorly known disease (MSA) and he died from it.. The whole story with details  ...   is not how much treatment they get [.. In memoriam: Monique Doyle Spencer.. | November 27, 2011.. Cross-posted from my own site.. Last night a dear and inspiring friend breathed her last.. Monique Doyle Spencer, metastatic breast cancer patient, died at home as she wished.. All knew the end was near.. A couple of weeks ago she happily attended her daughter s wedding; she had a good Thanksgiving, our mutual friend Paul Levy says, then [.. This year it s Occupy With Grace.. | November 22, 2011.. As in 2009 and 2010, this year too we donate our top post at Thanksgiving to the Engage With Grace movement, encouraging people to participate in this very important discussion, at the time of year when we re most likely to be together with families.. Because it is, above all, the family who needs to know.. Steve Jobs Cancer Denial.. | October 23, 2011.. The 60 minutes interview with Steve Jobs biographer is an intriguing piece that gives us a few insights into Steve Jobs and his battle with pancreatic cancer.. But the most disturbing part of the interview for me was watching Walter Isaacson, a former editor of TIME Magazine, talk about how Jobs was in complete denial [.. The unexpected power of storytelling.. | September 21, 2011.. The Journal of Participatory Medicine recently published a new commentary, A Skydiver Jumps, and an Online Community Exults, about the unexpected power of storytelling in a lung cancer support group.. After sharing an uplifting story with her online group, Patricia Flowers is surprised to learn how it moved and inspired her fellow members.. This article [..

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  • Title: ethics | e-Patients.net
    Descriptive info: Partnering with patients about patient centered RESEARCH METHODS.. | February 24, 2013.. This is a long post, but it strikes deep to the core of the transformation underway in medicine, even in the science that drives medicine.. It appears the world is starting to change, in a very good way.. We ve often written about the changing culture of medicine, as the professions begin to understand the value [.. Fact checking at Medicine X.. | October 5, 2012.. (A cross-post from susannahfox.. com) I had the great honor of being part of the first Medicine X conference at Stanford University last weekend.. I presented a sneak preview of new survey results collected by the Pew Internet Project and the California HealthCare Foundation.. Overall, the conference was magical, as I wrote in a previous post.. New editorial series in JoPM asks the tough questions.. | February 1, 2012.. A new Journal of Participatory Medicine tradition has just launched.. Our monthly editorial series will tackle the toughest questions of participatory medicine, from both the patient and the provider side.. The first installment, by Joe and Terry Graedon, is titled Participatory Medicine: Must You Be Rich to Participate? read on at http://www.. jopm.. org/?p=2342.. And by [.. JoPM: A Doctor s Remedy for Long Waits.. | January 11, 2012.. A new article in the Journal of Participatory Medicine tackles the problem of long wait times at doctors offices, a leading cause of patient dissatisfaction.. Waiting  ...   the Future, inspired me to write an epic comment about different perspectives on illness and care delivery, so I adapted and expanded it to share here: I recently read Susan Sontag s two essays, Illness as Metaphor (about TB cancer, published in 1977) and AIDS [.. Kari Ulrich: Experienced from both sides of the bed.. | November 11, 2011.. This guest post by Kari Ulrich, RN, originally appeared in a fibromuscular dysplasia e-patients blog.. The November 2011 issue of Reader s Digest reads in big, bold print, 50 Secrets Nurses Won t Tell You.. Articles like this create fear and mistrust in the patient community.. Case Study on Autonomy in Jeopardy for Mental Health Patients.. | September 13, 2011.. The Journal of Participatory Medicine has published a new case study entitled Autonomy in Jeopardy: Contrasting Participatory Health Models with Patient Decision Making Under Mental Health Law.. The authors examine the problem of how to achieve patient participation in societies where people with mental illness can have their decision making power overridden by mental health [.. Social media, patients, and physicians: a sticky wicket.. | August 9, 2011.. Social media is well established in our society and it shows much promise as a tool of patient-physician communication.. But despite some cases of good and enriching rapport between patients and physicians in social media, the medical world, on the whole, is still cautiously trying to make sense of social media and how to use [..

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  • Title: general | e-Patients.net
    Descriptive info: 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 s how to become a Society member, individual or corporate.. Our publications: This blog is e-patients.. Subscribe via RSS or email, tweets etc.. Our open-access journal is the Journal of Participatory Medicine (Twitter: @JourPM) Participatory Medicine is a movement in which networked patients shift from being mere passengers to responsible [.. | August 4, 2013.. What I Wish I’d Known Earlier….. | August 1, 2013.. This summer, I am reflecting and writing about what I wish that I had known earlier about getting good care following active cancer treatment, based on my experience with five different cancer diagnoses and what I have learned from others.. If you have been diagnosed and treated for cancer, I invite you to join me.. How e-Patients Plan for End of Life Decisions.. | June 27, 2013.. Decades ago, most people died at home.. Today health care technology including various surgical procedures, the use of feeding tubes, ventilators, CPR, dialysis, and  ...   of March, 2013, 160,890 eligible professionals had received Medicare incentive payments and 83,765 professionals had received Medicaid incentive payments.. While these numbers seem impressive, the question we have to ask is how many of these [.. Patient-family advisors: Don t say you volunteer say it s pro bono.. | June 3, 2013.. Updated 6/4 in response to Tony s comment, described below.. I m speaking today at the fifth annual Patient Family Centered Care conference, hosted by PFCC Partners in Long Beach, California.. (They re not related to the similarly named IPFCC.. ) At today s lunch panel, a 17 year old patient advisor named Jack, from Flagstaff, Arizona, said he got [.. Monthly Introduction to e-Patients.. | June 2, 2013.. | May 20, 2013.. Going public recently with her story of a prophylactic double mastectomy after testing positive for BRCA1 (a gene linked to breast cancer) via an op-ed piece in the New York Times, Angelina Jolie is clearly trying to get the message out that radical choices must sometimes be made in order to increase one s chances of [..

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  • Title: hc’s problem list | e-Patients.net
    Descriptive info: NY Times: Do clinical trials work?.. | July 15, 2013.. Just a quick note on something I m happy to say we ve been hollering here for years: A lot of what passes for evidence from peer reviewed medical journals is scientifically weak, and has never been verified by an independent lab.. That means to be scientific, e-patients and their physicians must be cautious about interpreting any published result: [.. Raw data now! Open science! Sign Ben Goldacre s #AllTrials petition.. | June 17, 2013.. Last year during TEDMED 2012, in “The cancer at the core of evidence-based medicine”: Ben Goldacre on the missing data, we covered the vitally important news that a lot of medical research has gone missing, leading to a severely corrupted foundation for evidence-based medicine.. If you haven t read that quick post with 6 minute video interview, please [.. What if health care ?.. | February 9, 2013.. For over a year I ve been the accidental manager of a community garden.. All I did I swear is point out an open plot of land and people started pitching in, planting, asking friends to join them.. All of a sudden we d transformed a bare patch into something beautiful.. I thought for sure [.. What if we treated substandard *info* like substandard drugs? (Riff on an IOM  ...   easily to get caught up in inspirational jargon.. But a recent visit for my biannual mammogram (fun!) helped me give a very [.. NEJM: Post-Hospital Syndrome.. | January 18, 2013.. SPM member Marge Benham-Hutchins (see her December post) spotted this item.. It s a vital point for patient and family awareness, leading to patient engagement patients as responsible drivers of their health.. I added the italics below.. From a recent Perspectives essay in the New England Journal: To promote successful recovery after a hospitalization, health [.. Top 5 Posts of 2012.. | December 28, 2012.. I was curious to see which were the top 5 posts, traffic-wise, and figured readers might be interested, too.. Here s the line-up: #1: Open knowledge saves lives.. Oppose H.. R.. 3699! by Gilles Frydman The e-patients.. net post with the highest number of views is a clear call to action in favor of open access to research.. Danny van Leeuwen: The Right Information in My Health Record.. | November 19, 2012.. Danny van Leeuwen, Opa MPH RN CPHQ is a patient (Multiple Sclerosis), a caregiver, a nurse, and a leader.. A version of this piece originally appeared on his blog, Health Hats.. What do we e-Patients need in our electronic health records? Help by sharing in the comments: 1) The scenarios where medical record content was [..

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  • Title: JoPM | e-Patients.net
    Descriptive info: Making Sense of Patient-Centered Care.. | April 30, 2012.. 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/.. JoPM: Making Every Second Count at the Doctor s Office.. | April 4, 2012.. Co-Editors-in-Chief Joe and Terry Graedon tell patients how to get the most out of today s all-too-brief medical office visits in the April editorial of the Journal of Participatory Medicine.. Making Every Second Count – What We Can Do As Patients complements JoPM s March editorial, which tackled the time problem from the physician perspective.. A psychiatrist touts self-care for patients and clinicians.. | March 16, 2012.. The Journal of Participatory Medicine has published An Introduction to Self-Care, a personal narrative by psychiatrist Sana Johnson-Quijada.. Inspired by a positive family experience with collaborative care, the author was emboldened to modify her communication with her patients in ways that enables them to engage more effectively in their care.. Rheumatoid e-Patients Share the Spotlight at Medical Conferences.. |  ...   maturing as a physician, the author persuasively argues that the key to practicing patient-centered medicine is devoting time to listen to patients stories [.. Book review takes a look at neurofeedback.. The Journal of Participatory Medicine has published a review of A Symphony in the Brain, a book that offers a history and overview of neurofeedback, a type of biofeedback that aims to help patients control their brain activity.. Two new JoPM articles tell one great participatory medicine success story.. | December 14, 2011.. The Journal of Participatory Medicine has published a pair of complementary articles, one by a patient advocate and one by a physician, both concerning the story of a woman who worked tirelessly to obtain better health care for her two chronically ill and developmentally disabled sisters, and of the team of participatory clinicians who helped [.. JoPM: Patient-oriented content on hospital websites.. | November 1, 2011.. The Journal of Participatory Medicine has published a research paper entitled Promoting Participatory Medicine with Social Media: New Media Applications on Hospital Websites that Enhance Health Education and e-Patients’ Voices.. The study analyzed the content of 14 top hospitals websites, particularly patient-oriented features.. The authors conclude that the convergence of interactive media formats with web-based [..

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  • Title: key people | e-Patients.net
    Descriptive info: Natasha is an e-Patient and the developer of Symple, a symptom journal for he iPhone.. She has been named a 2013 Stanford MedX ePatient scholar, TedMED Frontline [.. Mother s Day.. We have posted many stories featuring mothers over the years.. In celebration of Mother s Day, a compilation: A Lifetime of Participatory Medicine Can Start With Maternity Care Through the Land of Smoke and Mirrors: An e-Patient’s Odyssey ( Mama Lion part one) Great news from “Mama Lion” Engelman and daughter ( Mama Lion part two) The Unwilling [.. SPM Response to ONC RFI on Advancing Interoperability of EHRs and HIE.. | April 24, 2013.. With the tireless help of Adrian Gropper, and the counsel of executive committee members Michael Millenson and Danny Sands who went above and beyond, and our President Sarah Krüg, the Society for Participatory Medicine s Public Policy Committee completed a last-minute blitz and submitted comments in response to the Office  ...   surprise to those who were not looking for signs and indicators of trouble, not a surprise to [.. HIMSS blog featured e-Patient Dave.. | January 25, 2013.. The HIMSS blog features e-Patient Dave, the 5 Es of e-Patients and how social media can help.. org/2013/01/25/part-1-value-of-social-media-in-healthcare-is-already-outlined-just-not-realized/ For whatever reason – whether it’s budget, time, buy-in or understanding – healthcare hasn’t fully embraced social media.. But luckily the ePatient movement has already—perhaps unknowingly—done the grunt work and outlined the tenets of realizing social media’s [.. The Patient as Partner in Medical Research at Radboud University.. | December 29, 2012.. This encouraging news is adapted from the November cover story of Radboud University s magazine Radbode (PDF, in Dutch, 1.. 6MB).. Thanks to @LucienEngelen, initiator of this project, for forwarding it to us.. Not surprisingly, Lucien s also the creator of the heavily patient-centric Future of Health conferences, which started with TEDx Maastricht 2011.. Editorial note: I heavily edited [..

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