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Young Adult Survivor, Leukemia
Patient Advocate / Diabetes Blogger
Health 2.0 Speaker and Consultant
Founder, Diabetes Mine
"e-PATIENT DAVE" DEBRONKART
Survivor, Kidney Cancer
National Patient Advocate/Activist
Volunteer Chairman, Society for Participatory Medicine
Author, Blogger, Speaker ePatient Dave
After 6 months of battling with health care providers who either didn’t care, or wanted to report my family to child protective services, I was diagnosed at age 13 with Crohn’s disease. 21 years later, I’m missing a lot of intestine, have gained a bunch of symptoms and side effects, and am in my seventh year facilitating an IBD support group for my region. I’ve been incorrectly diagnosed with ovarian cancer, told I had an hour to live, been a passenger in an ambulance that got lost, fought for reasonable accommodations at work, bought and lost a home, participated in clinical trials for two medications that are currently very popular, and probably used half of the public restrooms in the United States.
I was a Stanford Medicine X ePatient Scholar for 2012 and again in 2014. That same year I was also selected to present a panel I created on invisible illness and pain tracking. The panel is notable for including the first virtual patient panelist at MedX.
Follow Carly on Twitter: @CarlyRM
website is: http://blog.chronicarly.com/
A discussion with Denise Silber, CEO of Basil Strategies, about why it is important for empowered patients ('ePatients') to attend eHealth conferences. Silber will talk about her efforts to establish and fund ePatient Travel Scholarships so that more patients can attend the third annual Doctors 2.0 & You conference, which her company is hosting.
Surviving a debilitating fall while rock climbing, Alan Brewington has become an inspiration to us all. Despite arthritis, chronic pain, surgeries and disability, he lives beyond an active and enjoyable life. A tax accountant by day, he spends his free time as a ski instructor, "ePatient" advocate, political operative, space nerd and is now a Stanford University MedX ePatient Scholar.
In the same week he can go from the seriousness of testifying before the Idaho Legislature about arthritis to telling silly second grader jokes with ease. His advocacy has led him to create www.paintalks.com in which he is advocate, friend and fellow warrior to those going through so many of the pains of life.
Just getting going in his thirties, there is no doubt we'll learn much from this inspirational, self-described "broken warrior" who has become healed in more ways than one.
On the continuation of the nimble yet mobile 'Health 2.0 Silicon Valley Countdown series' on Thursday September 26th 2013 at 12PM Pacific and 3PM Eastern our special guests are @RohitBhargava, author of @likeonomics and Fard Johnmar, founder of Enspektos.
Join Dr Pat Salber @docweighsin and me @2healthguru to meet these two innovators and learn what's behind the genesis of the to be released book 'ePatient 2015; 15 Digital Health Trends That Define The Connected Patient of the Future'. As well as whats on their radar for the upcoming 'fall classic'.
For an overview of Health 2.0 Silicon Valley 2013 by no other than @boltyboy himself, check out 'the health 2.0 countdown with Matt Holt'. Also on the record to date: a chat with Akhila Satish, CEO of @MyCyberDoctor, and Scott Brown President of @MyDirectives.
A Roadmap for Patient-Centric Conferences
Pharmaguy interviews Casey Quinlan, Co-Founder at Patients for Clinical Research, journalist, author, ePatient and patient advocate, about Patients Included: A Charter for Conferences and how the pharmaceutical industry can help ensure more patients are able to attend and participate in patient-relevant healthcare conferences.
"Patient centricity" is all the rage these days among pharmaceutical industry conference attendees and speakers. It is even becoming more common for actual patients to be part of the faculty/speakers and/or attendees of these conferences.
Questions/Topics of Discussion
The discussion focused on the following Charter clauses copied from the patientsincluded.org site:
Patients or caregivers with experience relevant to the conference's central theme actively participate in the design and planning of the event, including the selection of themes, topics and speakers.
Patients or caregivers with experience of the issues addressed by the event participate in its delivery, and appear in its physical audience.
Travel and accommodation expenses for patients or carers participating in the advertised programme are paid in full, in advance.
Scholarships are provided by the conference organisers to allow patients or carers affected by the relevant issues to attend as delegates.
The disability requirements of participants are accommodated. All applicable sessions, breakouts, ancillary meetings, and other programme elements are open to patient delegates.
Access for virtual participants is facilitated, with free streaming video provided online wherever possible.
Scott Strange, a 2014 MedicineX ePatient Scholar, 2-14 Medicine X Honor Roll member and 2015 MedicineX ePatient Delegate, has been a Type 1 diabetic since 1970 and clinically depressed for almost as long. He is especially interested in removing the stigma associated with so many health issues and with whole person health in particular. He blogs at Strangely Diabetic and you can find him on twitter as @strangely_t1.
On the Wednesday September 17th 2014 broadcast at 2PM Pacific/5PM Eastern we meet the amazing Kym Martin, MBA. Kym is a three-time, 30-year cancer survivor who is passionate about enhancing the patient experience in healthcare. Kym endured three different cancer diagnoses through three distinct stages of life. To treat her latest diagnosis of breast cancer in 2012, Kym elected to undergo conventional surgery for a bilateral mastectomy with reconstruction coupled with wholisitic nutrition and medicinal herbs to create a personalized, integrative care plan. Kym aligned her physical, emotional and spiritual preferences with her understanding of the human body’s restorative capabilities, her medical needs, her goals and her faith.
She also identifies herself as followd: ePatient, Consultant & Speaker, and Co-chair, Patient Experience Council for the Sullivan Institute for Healthcare Innovation. For a video interview with Kym at the Health Datapalooza in June, click here and here.
For more information on Kym, click here.
Join us for an informative chat with this thoughtful and determined woman.
On the Friday, May 9th broadcast at 12 Noon Pacific, 3PM Eastern our special guest is Stephen Wilkins, who publishes the 'Mind the Gap' blog. Stephen notes he is:
'...a writer, researcher, entrepreneur and speaker with a passion for all facets of physician-patient communications and its impact on patient engagement, patient activation, patient outcomes, visit productivity and the patient experience.'
For more click here.
The history if not genesis of his blog is noted as follows:
“Mind the Gap” is a warning heard on subway systems around the world. It is intended to alert individuals to avoid accidentally stepping in the “gap” that separates the train from the platform.
As used here, it is an expression that alludes to the communications gap that exists all too often today between patients and their physicians. Like the subway, this blog is a kind of warning. It is intended to making health care provider and organizations aware of the consequences of poor physician-patient communications…and how to avoid them.'
Join us for an informative chat!
The future of healthcare is the ISSUE for this episode of the "We All Got ISSUES" show. During this episode of the "We All Got ISSUES" show, Dr. Glenda interview Farad Johmar, author of ePatient 2015. Tune in to learn about 15 suprising trends in healthcare.
On the Wednesday, April 9th broadcast at 10AM PT/1PM ET our special guest is Danny Sands, MD, Health IT Consultant at Zev Enterprises and Co-Chairman, Co-Founder, and Past-President at Society for Participatory Medicine.
'Danny Sands is passionate about healthcare transformation, non-visit based care, collaboration in healthcare, and participatory medicine. He spent six years at Cisco, most recently as chief medical informatics officer, where he provided both internal and external health IT leadership and helped key customers with business and clinical transformation using IT. Danny’s prior position was chief medical officer for Zix Corporation, a leader in secure e-mail and e-prescribing, and before that he spent 13 years at Beth Israel Deaconess Medical Center in Boston, where he developed and implemented numerous systems to improve clinical care delivery and patient engagement.
He has earned degrees from Brown University, Ohio State University, Harvard School of Public Health, and trained at Boston City Hospital and Boston’s Beth Israel Hospital. Dr. Sands currently holds an academic appointment at Harvard Medical School and maintains a primary care practice in which he makes extensive use of health IT (much of which he helped to introduce during his tenure at Beth Israel Deaconess).
Sands is the recipient of numerous health IT awards, has been elected to fellowship in both the American College of Physicians and the American College of Medical Informatics, and is a founder and co-chair of the board of the Society for Participatory Medicine.'
Dr Sands co-authored 'Let Patients Help' with ePatient Dave.
Join is for an informative session.
Geralyn Lucas is an American journalist, television producer, writer. At the age of 29, she was diagnosed with breast cancer, wrote "Why I Wore Lipstick to My Mastectomy" and has since become one of the vocal advocates for the cause. Join us as we sit down with Geralyn for an exclusive 30-minute conversation about her remarkable life. ePatient and author Fard Johnmar in the advocate spotlight.
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