HIMSS or Bust

Regina Holliday

Last year I had the opportunity to do an amazing interview with Tim from HIStalk.  It was a wide-ranging discussion that covered a great deal of the HIT (health information technology) landscape.   Toward the end of our conversation, Tim and I began to talk about the challenges patients face attending HIMSS.  Many patients would like to go this enormous conference with its thousands of attendees, great educational sessions and access to numerous health care venders; but cannot afford to pay for hotel lodging, airfare and an attendee pass.  We talked about the possibility of working together to create patient travel scholarships.

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So today we would like to jointly announce the HIS-talking Gallery Patient Scholarship for travel to HIMSS 2015, April 12-16, in Chicago! (more…)

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Who is perfect? Advocacy ads for real people.

Jane Sarasohn-Kahn

What is the nature of disability? What is the nature of beauty? What is perfection? Who among us is perfect?

These questions are at the heart (literally and figuratively) of a project undertaken by Pro Infirmis, a Switzerland-based advocacy organization raising awareness of people with disabilities, promoting the International Day of Persons with Disabilities in December 2013.

Pro-Infirmis-Mannequins-and-People-300x188Mannequins in fashionable shops on Zurich’s tony street the Bahnhofstrasse were replaced by new ones, artfully, painstakingly and lovingly created, as shown in the video.

Pro Infirmis’s website tells us “who” we are looking at in human and 3-D life-size mannequin form: Miss Handicap 2010, Jasmin Rechsteiner; radio presenter and film critic Alex Oberholzer; track and field athlete Urs Kolly; blogger Nadja Schmid; and, actor Erwin Aljukic.

In Pro Infirmis’s words: Between the perfect mannequins, there will be figures with scoliosis or brittle bone disease modelling the latest fashions. One will have shortened limbs; the other a malformed spine. (more…)

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Fighting the injustice of health disparities: Honoring the legacies of Dr. Martin Luther King Jr. & Dr. John M. Eisenberg

Robin Strongin

For the past several years I have run this post and just as it was those years, it is this year a very important message.

Dr. Martin Luther King, Jr.John EisenbergWe, as a nation, have made progress and I believe Dr. King would be proud. But our work is far from complete – particularly where health care is concerned. Another doctor, Dr. John M. Eisenberg, a physician of tremendous stature whose life was also tragically cut short (not by an assassin’s bullet but by brain cancer) was equally passionate about the dignity of life and justice for all Americans. Dr. Eisenberg, who among other things, served as the Director of the Agency for Health Care Policy and Research (as AHRQ was known back in the day), cared deeply about access to and the integrity of health care for all Americans – regardless of skin color.

Fifteen years ago, on January 14, 2000, Dr. Eisenberg gave what is, in my opinion, a brilliant speech to the employees of the Department of Health and Human Services. As with the past years I want to share his words with all of you today — as a reminder of how far we’ve come, and how far we still have to go. (more…)

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  • January 13th, 2015 Filming in the ER: A Policymaker Perspective
    By Glenna Crooks
  • January 12th, 2015 Filming in the ER: A Patient Perspective
    By Glenna Crooks
  • Congress Passes ABLE Act: Major Victory for Persons with Disabilities and Their Families

    Congratulations to one of our 2015 Disruptive Women to Watch Madeleine Will for all her work on this legislation and on behalf of persons with disabilities. 

    (Washington, D.C. – Dec. 17, 2014) – Last night, the U.S. Senate overwhelmingly passed the Achieving a Better Life Experience (ABLE) Act of 2014 by a vote of 76 to 16. First introduced in 2006, and subsequent sessions of Congress, the ABLE Act will allow people with disabilities (with an age of onset up to 26 years old) and their families the opportunity to create a tax-exempt savings account that can be used for maintaining health, independence and quality of life.

    “Today marks a new day in our country’s understanding and support of people with disabilities and their families,” Michael Morris, National Disability Institute (NDI) Executive Director, said. “A major victory for the disability community, ABLE, for the very first time in our country’s policy on disability, recognizes that there are added costs to living with a disability.” He continued. “For far too long, federally imposed asset limits to remain eligible for critical public benefits have served as a roadblock toward greater financial independence for the millions of individuals living with a disability.”  (more…)

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    Healthcare’s Renewable Resource: Authentic Patient Experience

    kym

    Cancer is my medical degree. Navigating my way through three distinct cancer diagnoses across three unique stages of life and managing three different treatment paths is my specialty. In the course of enduring Hodgkin’s Lymphoma at age 17, melanoma at 38 and, in 2012, breast cancer at 46, I’ve amassed firsthand expertise in the critical areas of patient-provider communications, care coordination, patient safety, insurance reconciliation, disease prevention, and personalized treatment planning.

    From the time of my first cancer diagnosis over 30 years ago to today, cancer has influenced my life and risk of future disease. To put my experience in perspective, the collective time I spent in the throes of surgery, recovery and treatment of my two most significant diagnoses – Hodgkin’s lymphoma and breast cancer –totals twelve months. So, I have spent only 1/30th of my cancer experience fully immersed in the healthcare system. (more…)

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    Top 10 Reasons we need The Walking Gallery Center for Arts and Healing in Grantsville, MD

    Regina Holliday

    In the week since I started our crowdfund on Medstartr to help fund the creation of The Walking Gallery Center for Arts and Healing some folks have had a few questions about this project. Though I do not do list posts very often, I thought this would be the easiest way to explain why we need to create this center.

    10. People need space to create.

    I recently worked with the students in every class in Grantsville Elementary School as they created art for the Grantsville Art Walk. That is 220 some children working with me and their art teacher Torria Quesenberry . We met in Ms. Quesenberry’s classroom.  (more…)

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    Lift Every Voice: Listen to Women Veterans

    Janice Lynch Schuster

    During last week’s Veteran’s Day inspired concerts and tributes to veterans, a Hill-gathering of Disruptive Women (and our man of the month, Rep. Tim Walz, MN) spoke truth with power. Gathered to discuss challenges faced by women veterans, the group included veterans, members of Congress and their spouses, congressional staff, state leaders, and filmmakers. The group had had enough of platitudes and promises. We were ready for disruption, and Rep. Walz delivered just that, saying he was done with “incremental change” (Washington’s latest, favorite buzz-word) and prepared to lead “seismic change.”

    walz panelWalz speaks from a place of experience, knowledge, and passion: He is a retired soldier, and the highest rank ranking enlisted man to serve in Congress. During a 24 year stint in the Army National Guard, including a tour of duty in Operation Enduring Freedom, he also taught high school. The latter tour provided him some insight into chaos and disruption. In the 113th Congress, he will serve in leadership roles that include the National Guard and Reserves Caucus, and the Congressional Veterans Jobs.

    In his remarks, Walz noted that “it doesn’t take much to offer health care that people can’t access.” He added that although the VA has made some progress since the days when “the best thing the VA could say for what it had done for women was that the exam tables no longer  that face the door.” Later, he added that the VA system—staffed by dedicated people—still has far to go to really offer care for all, noting that, “it is much easier to put up a yellow ribbon then it is to step up care.” (more…)

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    An Attitude of Gratitude

    Amber Coleman-MortleyWe live in a community where there are a lot of military personnel.  We often see them in uniform coming and going during the morning and evening commute.  My children never really noticed until one day I randomly thanked a guy for his service.  I had been having a really bad week and for some reason seeing this man in uniform reminded me that there was a lot in my life to be thankful for.  Acting on impulse  I abruptly blurted out, “Thank you so much for your service”.  The guy smiled a shy smile and went on about his day.

    Puzzled, one of my kids says, “Mommy what are you thanking him for?  Who was he?”.

    “Well people like him, and others you see dressed in uniform, are making a huge sacrifice. Their spouses, their children, their siblings and their mommies and daddies are all making a sacrifice so that the rest of us can go to buy gasoline to go places we love; buy the toys and things we like; have ideas and express them; safely walk our streets without the threat of bombs.  (more…)

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    November Man of the Month: Congressman Tim Walz

    Congressman Tim Walz (MN-01) is Disruptive Women’s November Man of the Month. Yesterday at our Disparities and Disservice: Women Veterans Deserve Better Health Care briefing we were pleased to present him with this honor and a t-shirt. As a 24-year veteran of the Army National Guard, Congressman Walz works to assure the safety and security of those who serve and have served in our armed forces. He also works tirelessly to ensure they have access to the benefits they deserve. Because of this and his commitment to providing the men and women who return from service with the opportunity to achieve success, happiness and good health in civilian life we are proud to name him November’s Man of the Month.

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    Am I a Veteran?

    alfie

    This post is part of a new series, Disparities & Disservice: Women Veterans Deserve Better Health Care. The series will culminate with a briefing on Thursday, November 13 at noon.

    A very personal story illustrates why we continue to have disparities, especially in health care, among women who served in the military.

    I was at an event a number of years ago and towards the end of the program, the master of ceremonies, a retired Admiral, called on veterans by war service to stand and be recognized.  Ten WWII veterans stood and took a bow; four Korean War veterans came to their feet and were honored.  The Admiral then asked for Vietnam War veterans to stand and a third of all in attendance stood and the room went crazy in applause.  At that moment I realized that I was still sitting!  There I was, a 22 year Army veteran who served during the Vietnam and Gulf wars and I was still sitting…it was like a kick in the stomach and then I got angry at myself and the fact that I, who knows better, got distracted by the relationship that the word veteran has to serving in a war which correlates to deployment and combat.

    All this all happened in a matter of seconds and once I snapped out of it, I stood up to receive the recognition I was due among my wartime peers.  I did not serve in the war, but I was part of the Vietnam War as I cared for our wounded and their families in military hospitals.  (more…)

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    The demoralizing care women veterans receive…I have solutions

    diana dThis post is part of a new series, Disparities & Disservice: Women Veterans Deserve Better Health Care. The series will culminate with a briefing on Thursday, November 13 at noon.

    Out here, the sunrises and sunsets are breath taking. You can feel the calm and quiet, perfected by the chirping of birds and the rhythm of insects.  Reflection is mandatory.  Rural life is slower.  The night skies are darker, shimmering brightly with millions of stars.  The few sirens we hear sound for a few seconds in the morning, midday and early evening… a sort of alarm clock for farmers.

    The isolation is peaceful, centering, inviting…. and dangerous for aging disabled veterans far removed from their Community Based Outpatient Centers (CBOC’s) and VA hospitals and lacking community services.

    The average person who suffers an injury goes to the closest ER or clinic. The rural veteran weighs the distance to the VA – mine is a couple of hours away – versus my personal assessment of how badly I am injured or how ill I feel. (more…)

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    The Road to Veterans Day 2014 Fact Sheet

    va_seal_logo

    The Road to Veterans Day 2014 Fact Sheet

    Summary:

    The Department of Veterans Affairs (VA) has an important mission: caring for Veterans and their families, and VA has strong institutional values – mission – critical ideals that must influence day–to-day behavior and performance: Integrity, Commitment, Advocacy, Respect, and Excellence.

    To better fulfill our mission and to improve our service those who have ‘borne the battle,’ their families, and survivors, VA has developed The Road to Veterans Day 2014 — a series of strategies and actions that will enable the Department to:

    • Rebuild trust with Veterans and the American people;
    • Improve service delivery; and
    • Set the course for long – term excellence and reform. (more…)


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    Service

    Patricia Lee Stotter

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    This post is part of a new series, Disparities & Disservice: Women Veterans Deserve Better Health Care. The series will culminate with a briefing on Thursday, November 13 at noon.

    Meet the women in our film
    Meet the women in our social media
    Meet the challenges they face:
    Fighting to get their benefits
    Fighting to get medical care,
    Fighting to overcome their visible and invisible injuries.

    These women veterans are still serving,
    for as they struggle for good and timely medical care for themselves,
    they are on the vanguard for all women. (more…)

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