Category Archives: Health Care Social Media

How to BEST BE a Crohn’s Disease, Colitis or Inflammatory Bowel Disease (IBD) Patient?

Hands SMALL jpeg for email signature February 2 2013

This is Video Answer Number ONE (1) in a NEW Video Series of Answers to Important Questions for the Crohn’s Disease, Colitis and Inflammatory Bowel Disease (IBD) Patient.  These Answers have been compiled with the knowledge and experience of the growing members of the Crohn’s Disease Warrior Patrol (the “CDWP”).  This is NOT Medical Advice and is being offered solely for support, by Patients, for Patients. 

This 6-minute Video details the following CDWP Answer to this Question:

  1. Find the Right Doctor FOR YOU;
  2. Collaborate with your Doctor;
  3. Patient “Engagement” – Don’t be Passive;
  4. Organize & Collect your Medical Data; and
  5. Learn to be “Patient” & Maintain “Perspective.” 

Copyright © 2013 CDWP – All Rights Reserved

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MAW PPP January 28 2013

Incredibly Generous Volunteer Response to Crohn’s Disease Warrior Patrol

As most of you know, we launched the Crohn’s Disease Warrior Patrol a few weeks ago and the Volunteer Response from ACROSS the US and beyond has been INSPIRING.  It’s incredible how such a simple idea evokes the generous spirit to help other patients going through what you’ve already experienced.  Crohn’s Disease “Warriors” have signed up to volunteer for the Crohn’s Disease Warrior Patrol from Hawaii, Alaska, Oregon, Seattle, Cleveland, Michigan, Pennsylvania, Arizona, Wyoming, Ontario, Canada, Brazil, New York, Long Island, Los Angeles, San Francisco and all places in-between.  Please consider SIGNING UP or SUPPORTING US.  Thanks.

Below are short REAL “testimonials” which demonstrate the PASSION of these selfless Volunteers who make up the Crohn’s Disease Warrior Patrol.

I am constantly learning about myself through this disease and others with it.  If I can be of help to anyone and experience other IBDers, what a gift! – Honolulu, Hawaii

I have wanted to help others for many years now and this would be perfect!  Landsdale, PA

I feel that there is a need for this type of help to talk to patients facing a new diagnosis of IBD and Ostomy.  I would love to help in any way I could.  Mobile, Alabama

I would love to share my experiences or just listen to others vent or talk it out. Just be there because I understand & have been through most of it.  Bethpage, NY

So glad that I ran across this new program.  My CCFA support group just discussed how awesome it would be to be able to visit newly-diagnosed IBD patients, even in the hospital, as most have never heard of it and are likely “freaking out” about their diagnosis.  Niles, MI

I feel this is such a great program for people that are scared and alone in the hospital. Even if they aren’t alone, it’s of paramount importance that they talk to someone with this disease-at least that’s my opinion. Doctors and nurses can only empathize to a degree.  Greensburg, PA

Would like to sign up to be a Warrior and help those worse off than me!  Bridgewater, NJ

I would be willing to be a Crohn’s Disease Warrior (“CDW”) and visit hospitalized patients. There are a lot of us IBD’ers here. If I can help, please let me know :)   Waterloo, Ontario, Canada

I am very seasoned & qualified to do visits to new patients. Please let me know if I can help.  Central Michigan

I would like to go and visit Crohn’s patients in the hospital.  Fort Collins, CO but I could also visit between Cheyenne, WY, and Denver, CO.

I would Love nothing more than to give back and take even an ounce of degradation/humiliation from a fellow Chron-ee and prove it WiLL be alright!! I have been looking for a program exactly like this and I HoPE that I can help in any way!! Los Angeles, CA

I would be happy to visit, support, run errands for anyone in the hospital.  San Francisco, CA

I am a 38 year old Crohn’s patient, diagnosed 10 years ago and live in the Seattle area. First I would like to thank you for such an awesome idea! I have spent many nights in the ER or hospital room, alone and honestly I can’t even imagine being a child going through this!  Seattle, WA

I’d be happy to share my story with people recently diagnosed or ongoing patients so that they can see there is “life” with Crohn’s. It’s not always easy but I’ve learned that attitude goes a long way!  Long Island, NY

I have visited Crohn’s patients in the hospital many times to help them before or after a surgery. Just to be there to listen, talk, teach, cry – whatever it took to let them know they are not alone.  Cleveland, OH

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MAW PPP Dec 21 2012

Tina Fey HILARIOUS Drug Parody Commerical – Is FDA watching?

 

Tina Fey / SNL – Drug Parody Video – “Annuale”

I made reference to this CLASSIC video last night in my Speech before the distinguished attendees at Health 2.0 NYC to point out the absurdity of TV Drug commercials aimed directly at Patients.  This Hilarious 2-minute Parody captures why these advertisements to the captive audiences of television watchers are devoid of any credibility.  The beginning video images of these ads for drugs like Humira, Lyrica and the usual suspects of erectile dysfunction drugs first appear to sell “Hope” to desperate patients yet if the viewer LISTENS CAREFULLY the legal disclaimers about possible side effects all but negate that Hope.

FDA – Analog Regulations thwarting Pharma Digital Opportunities

I understand the FDA has a difficult task ahead of it in trying to regulate Pharma promotional efforts in the “Digital” world of Social Media.  But as this parody so eloquently points out, permitting pharmaceutical television ads targeted directly at passive Patients is a joke because broadcast television, in the context of Pharma Promotion, is NOW an “Analog” technique that only serves to thwart Pharma’s digital opportunities in health care social media.  The voice-over warnings in these analog TV drug commercials dilute the possible efficacy of the drugs.  However, we live in a society where we all have the attention-spans of mosquitoes such that the opening video images of these television commercials are manipulative as they make such an indelible impression that the patient is actually done an injustice by being exposed to such duplicitous promotional efforts.

FDA/Pharma MUST Embrace the Digital World – like the Entertainment Industries

I don’t blame Pharma for these border-line deceitful commercials as they are only doing what they are permitted to do under ambiguous piece-meal FDA “regulations” which serve no purpose other than to insure the FDA is not sued for encroaching upon Pharma’s 1st Amendment-based protected “commercial speech.”  But the FDA, if they truly intend to LEAD and REGULATE, needs to re-envision the new Digital world in which we live where “Patient Engagement” in Social Media is to Pharma what the mp3 file was to the Record industry.  The Record industry initially had problems regulating these digital downloadable files but eventually they figured it out.  Hollywood followed their lead and enacted various measures to encourage the growth of digital opportunities while simultaneously controlling piracy. The running joke in Hollywood at the time was that the only reason they weren’t as badly impacted by the proliferation of the Web and Peer-to-Peer File Sharing sites as the Record industry was because back then it took much longer to download Video Movie files.  That changed quickly, however, and Hollywood learned from their entertainment industry colleagues in the Record industry.

The FDA and Pharma need to LEARN from these examples set by these two (2) hyper-sensitive high-profile  industries which are just as much a part of daily life in the United States as Patients taking drugs to combat serious medical ailments.  Moreover, it’s only going to get more challenging with the almost daily proliferation of digital opportunities when the FDA and Pharma must embrace mobile health, electronic health and health care social media into the practice of medicine and the businesses of Healthcare and Pharma.  Therefore, please take the 2-minutes to watch this video as its humor is thought-provoking and hopefully instructive to the FDA and Pharma where the word “Promotion” needs to be transformed into meaning “Patient Engagement.”

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MAW PPP Banner Jan 18 2013

 

KevinMD.com Interview re: proliferation of Health Care Social Media (“HCSM”)

Sometimes in life, all you have to do is ASK.  That’s how I managed to get Kevin Pho, MD, Founder of KevinMD.com, a/k/a “social media’s leading physician voice,” to grant me an exhaustive Interview about the increased role of Health Care Social Media (“HCSM”) in the Practice of Medicine.  The combination of our respective backgrounds as Physician and Patient made for a compelling and informative interview which covered BOTH perspectives with respect to HCSM.  Ergo, whether you are a medical professional, patient, doctor, medical school student, etc., I think you will enjoy Dr. Pho’s informative and thoughtful answers as we talked about everything from Rating Physicians on-line to integrating mobile health & Smartphones into the traditional medical examination room to the present/future effects of ObamaCare on Healthcare and discussed the prospects of using technology like Skype for Video Medical Exams and chronic illness Follow-ups.

For those of you who are unfamiliar with KevinMD.com, here are the formidable accolades and “notices” of his extraordinary career in HCSM:

  • Social Media’s Leading Physician Voice
  • KevinMD.com is the web’s leading destination for physician insight on breaking medical news.
  • Klout named KevinMD.com the web’s top social media influencer in health care and medicine. (Klout is a company that provides social media analytics to measure a user’s influence across his or her social network. The analysis is done on data taken from sites such as Twitter, Facebook, and Google+, and measures the size of a person’s network, the content created, and purports to measure how other people interact with that content.)
  • Forbes hailed KevinMD.com as a “must-read blog,” and CNN named @KevinMD as one of its five recommended health care Twitter feeds.
  • His commentary regularly appears in USA Today, where he is a member of their editorial Board of Contributors, as well as CNN and the New York Times.  His opinion pieces highlight the challenges everyday doctors face, ranging from the primary care shortage to the epidemic of physician burnout.
  • He also shares his social media insights in the upcoming book, Establishing, managing, and protecting your online reputation: A social media guide for physicians and medical practices.

I separated the January 24, 2013, Interview into 3-parts and TODAY posted all three parts at once because Dr. Pho’s answers were so succinct yet thorough that I didn’t  see the point to staggering them out.  Accordingly, the Links to all three (3) are below and consume/enjoy them at your convenience and PLEASE feel free to share any COMMENTS on my Blog.

KevinMD.com Interview re: Health Care Social Media – Part 1 of 3

KevinMD.com Interview re: Health Care Social Media – Part 2 of 3

KevinMD.com Interview re: Health Care Social Media – Part 3 of 3

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MAW PPP January 28 2013

Inaugural Hospital Visit of “Crohn’s Disease Warrior Patrol”

In this case, a Picture truly does say a thousand words so I will keep this brief.

A bunch of folks on Facebook with Crohn’s Disease and Inflammatory Bowel Disease (“IBD”), were notified by Ivy Lindsay of “Comfort Ostomy Covers by Ivy” that a 9-year old boy named Damon had been hospitalized SINCE NOVEMBER 1, 2012 with a variety of life-threatening ailments which HIPAA prevents me from disclosing.  However, Damon BEAT THE ODDS and continues to get better although he will be battling for a while.  Part of his battle involves areas which we Crohn’s and IBD veterans or “Warriors” are familiar with.  Hence, the inaugural “Crohn’s Disease Warrior Patrol” hospital visit at Maria Ferari Children’s Hospital at Westchester Medical Center in Valhalla, New York.

Ivy Lindsay orchestrated things on Facebook and she and I spoke on the phone on Saturday, December 29, 2012.  After being told the specifics, Marisa Lauren Troy and Jeffrey LeVine immediately volunteered to come with me on Sunday, December 30, 2012, to visit with Damon and his two (2) Moms.  All we wanted to do was bring some knowledge and comfort to them and help alleviate the enormous stress of being a hospital patient or loving a hospital patient.  Thankfully, our visit seemed to work as we each shared our respective experiences with Damon and his Moms and, before we knew it, Damon was smiling a bit and even willing to stroll on over to the couch with his IV Pole and various other hospital “attachments” to take the above picture.  We also had the privilege of meeting and getting to know some extraordinary people in Damon and his Moms.

In reaction to the posting of the above picture on various Health Care Social Media Platforms, the outpouring of wonderful messages, gestures, thoughts, etc. regarding Damon has been INCREDIBLE.  Some have even responded with wanting to send “care packages” of video games and the like.  If you want to do that for Damon, please just contact me and I will pass it along in terms of where to mail it and whatnot.

If you are interested in helping the Non-Profit Organization we have built to make these hospital visits possible, please visit http://crohnsdiseasewarriorpatrol.org and click on “Donate” / “Sign Up Here” tab.  Or you can just click on the Screenshot Picture below.

Thanks and have a Happy and Healthy New Year. :)

 

 

 

Interview w/ CEO of Wego Health – “Empowering Health Activists to help Others”

The motto above comes from the company Wego Health which counts among its primary assets, “Patient Influencers,” whom they empower to help bring about positive change in both the business and practice of Medicine.  I am one of those “Patient Influencers” for “Crohn’s Disease” and “Managing Chronic Illness,” and I recently had the privilege of interviewing its CEO, Jack Barrette, at a Pharmaceutical Social Media Conference in New York City to find out how such a “Patient-centric” company operates.

After spending only a few minutes talking with Wego Health’s Jack Barrette, it’s apparent Wego Health envisions Patients as possibly the most valuable resource in Medicine today. How Wego Health utilizes these “Patient Influencers” to help a myriad of people, professions and industries within the catch-all of “the practice of medicine” is the focus of our discussion.

 Jack Barrette, CEO
Wego Health
180 Lincoln Street, 5th Floor
Boston, MA 02111
@HealthyJack
www.WegoHealth.com
 
 
 
 
 
 
 

 

Liz Boehm of Experia Health – Humanizing the Healthcare Experience

In this  episode of “The Healthcare Interview,” Liz Boehm, Director, Patient Experience Collaborative, Experia Health, is asked about “The Patient Experience” by “professional” patient, Michael A. Weiss.

Experia Health, a subsidiary of Vocera Communications, Inc., is a proactive company whose team works with organizations around the globe to bridge the gaps in “the healthcare experience,” restoring and revitalizing the human-to-human connections to improve patient outcomes from a variety of perspectives. In plain speak, they strive to: “Humanize the Healthcare Experience.

In this 7-minute Interview, Ms. Boehm shares her smart insights and refined expertise on the status of “the healthcare experience,” the almost PTSD-induced pressures faced by dedicated healthcare workers and explains cutting-edge Patient Social Media communication tools such as www.CarePages.com and www.MDconnectME.com.  She also details the makings and importance of what could be the first successful “closed” or “secured” social media platform for “authenticated” adolescent hospital cancer patients, presently being tested at the prestigious Radboud University Nijmegen Medical Centre in The Netherlands, for whom ongoing and safely monitored communication with one another has been made possible.

Mental Health Providers using Health Care Social Media in Therapy

In this 2012 Interview, which is Part 2 of a 2-Part interview with Steph Horgan, LCSW and Tiffany Taft, PsyD, of Oak Park Behavioral Medicine located just outside Chicago, Illinois, we discuss how they use various Health Care Social Media platforms such as Facebook, Twitter and Skype to treat patients with various chronic illnesses.

How to use Social Media to Manage Chronic Illness

I created this PowerPoint Presentation for an “Ignite” Speech at the “Partnership with Patients Summit” recently held in Kansas City, MO.  An “Ignite” speech is one with Twenty (20) PowerPoint Slides; but each can only be shown for Fifteen (15) seconds.  It is more like an “Improv” art-form which when done well results in a succinct 5-minute speech that educates the audience about a topic with which they were unfamiliar.  It is also fun to create and fascinating to watch the styles of other Ignite Speeches since they are usually presented by several different people at a Conference or at an Ignite Get-Together.   If you’ve never heard of Ignite Speeches, check out these taped Live examples. Please also note it was the first Ignite speech I had ever prepared and I am not the most gifted PowerPoint operator!
In terms of my Ignite Presentation, it is predicated on what I believe is a technology-powered grassroots Patient Movement called Health Care Social Media (#hcsm on Twitter).  I used my 30 years of experience with Crohn’s Disease to walk the audience through how Health Care Social Media could help them if they are ever diagnosed with a chronic illness.  My slides and points ranged from broad education to specific engagement with other Crohn’s patients to even suggested coping skills.  For example, I  included some Podcast information on “The BS Report with Bill Simmons,” an ESPN Podcast with “Sports Guy” Bill Simmons because listening to my favorite podcast helps me “cope” when I am hospitalized for Crohn’s.  It’s the power of a familiar voice amidst the chaos of the hospital setting that makes me feel like I’m at home listening while taking a walk or trying to relax which makes the inclusion of such a slide therapeutic. I also broadened the scope to show how it is very easy to find patient communities for Rheumatoid Arthritis and even ones regarding general patient advocacy like CNN’s, “The Empowered Patient.”
I learned a great deal by putting this together and also by taking in the styles of the other presenters.  I can’t think of the last time that happened so I’m looking forward to my next Ignite speech.  By then, I will hopefully have mastered how to properly “size” Screen Grabs so they convey the message I’m trying to communicate!  So, enjoy the Presentation and I beg you to just be “creative” and keep in mind that it was “15 seconds and onto the next slide,” whether I was ready or not. :)
In any event, my Ignite speech should make you a more Assertive and Empowered Patient.