Data Independence Day Series

my dataOur posts this week will all focus on health data and individuals right to access it in honor of “Data Independence Day”. Data Independence Day initiated by Former National Health IT Coordinator Dr. Farzad Mostashari (you will hear more from him later this week) is a movement that will come to a head on July 4 when the Get My Health Data effort launches. The movement is focused on consumers demanding electronic access to their health information. It began when patient advocates responded to the recently loosened rules governing the “meaningful use” EHR Incentive Program. In April, CMS announced it was changing the provision that requires eligible providers to prove that five percent of EHR users have viewed, downloaded, or transmitted information contained in their patient portal. The change, eligible providers now only need to prove that “equal to or greater than 1” patient has interacted with their record. You can see why patient advocates were outraged. (more…)

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Institute for Music and Neurologic Function’s 2015 Summer Institute

Each One Counts Foundation Sponsors Institute for Music and Neurologic Function’s 2015 Summer Institute

Workshop to Explore Therapeutic Applications of Music in Pediatric Pain Management

Bronx, New York – The Institute for Music and Neurologic Function, a member of CenterLight Health System, will offer a two-day workshop to enhance and increase the therapeutic applications of music in pediatric pain management. Presented July 13 -14, the symposium is made possible by a generous, $10,000 grant by Each One Counts Foundation, an organization dedicated to providing complementary pain management therapies for children.

“We are grateful to Each One Counts for providing us with the opportunity to share this crucially  important work,” said Dr. Concetta Tomaino, Executive Director of The Institute for Music and Neurologic Function. “It’s a privilege to help advance the foundation’s mission of providing care, relief and comfort to children in need.” (more…)

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Saving AHRQ: Hope on the Horizon

Whitney Bowman-Zatzkin

You likely felt the ground shake a bit this week when the House Appropriations Committee released its FY16 funding language.

Right there in Section 266 on page 94, the language proposed the termination of the Agency for Healthcare Research and Quality (AHRQ):

whitney

With all of the attention lately about the desires in Congress to invest in research to advance the discovery of treatments for diseases – with hearings, news articles, and patients making trips to DC to be in the headlines across the country – this news came as quite a blow to many in the health research arena.

There is hope on the horizon. (more…)

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Disruptive Woman Sharon Terry’s Thoughts on Precision Medicine

Sharon TerrySharon Terry, President and CEO of Genetic Alliance, shares why she is personally invested in the Precision Medicine Initiative. Watch this video for her thoughts.

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Women’s Heart Health: What We Don’t Know

Phyllis Greenberger

The post below original ran here on HUFFPOST Healthy Living on June 9.

Women’s Heart Month has come and gone but heart attacks have not. While it is a positive sign that cardiovascular disease in women is finally being recognized — there are successful campaigns educating women about the prevalence of heart disease and its varying symptoms – fewer than one in five healthcare providers – including cardiologists — recognizes women’s hearts as differing from men’s. Many outstanding questions remain about diagnosing and treating women with heart disease.

Since 1984, more women than men have died of heart disease each year. While women tend to have heart attacks later in life, there are women who experience them in their twenties and thirties. These women are often healthy, in good physical shape, and have no symptoms. Despite this large number of women affected by cardiovascular disease, women and minorities are underrepresented in cardiovascular clinical trials. Only one-third of cardiovascular clinical trials report sex-specific results, making it ever more difficult for researchers and clinicians to know how a particular drug or device will affect women. [1] (more…)

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The Society For Women’s Health Research Announces “Beyond The Bruises” Campaign Highlighting The Effects Of Domestic Violence On Chronic Disease

bruisesThe press release below was issued May 27 by the Society for Women’s Health Research and can be seen here.

The Society for Women’s Health Research (SWHR ®), a national non-profit and thought leader in research on sex differences in health and disease, today announced “Beyond the Bruises,” an online campaign uniting survivors, advocates, organizations, and celebrities in bringing awareness to the effects of domestic violence on chronic disease.  The campaign features a short film that shares the stories of domestic violence survivors who struggle with chronic disease as a result of their abuse, as well as the website BeyondtheBruises.org, a resource center that houses information on the often unrecognized effects of domestic violence on chronic illness.

A 2013 study conducted by MORE Magazine and the Verizon Foundation found that 81 percent of domestic violence victims experience chronic health problems, proving that domestic abuse is not only a criminal issue, but a public health issue as well. “Domestic violence is a huge problem affecting men, women, and children every single day,” said Kristina Paruginog, one of the subjects in the film. “Do not be ashamed, do not be embarrassed, and most importantly, seek help.” (more…)

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All women are health workers

Jane Sarasohn-Kahn

How women define health Center for Talent Innovation

The following post originally ran on Health Populi on May 26. See the original post here.

The spiritual and emotional top the physical in women’s definition of “health,” based on a multi-country survey conducted in Brazil, Germany, Japan, the UK and the U.S.

The Power of the Purse, a research project sponsored by the Center for Talent Innovation, underscores women’s primary role as Chief Medical Officers in their families and social networks. The research was sponsored by health industry leaders including Aetna, Bristol-Myers Squibb, Cardinal Health, Eli Lilly and Company, Johnson & Johnson, Merck & Co., Merck KGaA, MetLife, Pfizer, PwC, Strategy&, Teva, and WPP. (more…)


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Missed our Indoor Tanning Event, Don’t Fret…We’ve got a Recap

Tim_HeadshotOur Skin Cancer Awareness Month series comes to a close today. Below is a recap of Wednesday’s event co-hosted with the Congressional Families Cancer Prevention Program, The Hazards and Allure of Indoor Tanning Beds on College Campuses.

It was a late night call to Dr. Elizabeth Tanzi that made dealing with melanoma a personal experience. Tanzi, a dermatologist who previously had many difficult face-to-face conversations with patients to discuss a skin cancer diagnosis and subsequent treatment options, had decided to test a sample of her own skin after discovering noticeable symptoms. She had no risk factors, limited sun exposure, and at 37 years of age, she hadn’t been in a tanning bed since she was college-aged.

But when she listened to her voicemail, she knew that her colleague’s urgency signaled that the news was bad; she just needed to know how badly her skin cancer had progressed.

Tanzi, who has now survived multiple bouts of melanoma, shared this courageous story and joined other fierce cancer prevention advocates to talk about the reality of skin cancer and the dangers of tanning. The Capitol Hill event, “The Hazards and Allure of Indoor Tanning Beds on College,” was co-hosted by Disruptive Women in Health Care and Congressional Families Cancer Prevention Program, a program of the Prevent Cancer Foundation. (more…)

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Birth of Pull the Plug on Tanning Beds

unpluggedWith May being Skin Cancer Awareness Month and in tandem with yesterday’s event co-hosted with the Congressional Families Cancer Prevention Program, The Hazards and Allure of Indoor Tanning Beds on College Campuses we are running a series on skin cancer. Be sure to check back daily for posts on skin cancer including how you prevent and detect it. Enjoy!

Eight years ago, my daughter Jaime died from melanoma, which the doctors believed was from her use of tanning beds in high school and college. She was diagnosed when she was 20 and fought the evil beast of a disease until her death at 29.

My Jaime’s story gave me the passion and conviction to become “the indoor tanning industry’s worst nightmare.” The day after Jaime’s funeral I began going after the indoor tanning industry and their lies and deception. I drew their wrath by commenting on magazine and newspaper articles on the internet about the dangers of tanning beds (see http://www.vice.com/read/i-was-paid-to-go-undercover-for-the-tanning-industry-122). Social media was in its infancy; Facebook and Twitter had not yet been born. (more…)

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Addressing the risks of indoor tanning

RLD officialWith May being Skin Cancer Awareness Month and in tandem with our event Wednesday co-hosted with the Congressional Families Cancer Prevention Program, The Hazards and Allure of Indoor Tanning Beds on College Campuses we are running a series on skin cancer. Be sure to check back daily for posts on skin cancer including how you prevent and detect it. Enjoy!

It is not the kind of selfie we usually expect to see on Facebook. A young woman looks forlornly away from the camera, her face covered from top to bottom with bloody scabs—the result of treatment for skin cancer. The therapy is aggressive; but it is necessary, because at the age of just 27, Tawny Willoughby has had carcinoma six times. Almost every time she sees the dermatologist, she has to have more cancerous tissue removed. By posting her painful photo on Facebook, Tawny hopes to save others from a similar fate. At the time of writing, the image has already been shared almost 70,000 times.

Tawny’s risk of developing skin cancer was greatly increased by her frequent use of a tanning bed. Research published in the British Medical Journal links indoor tanning to more than 170,000 cases of skin cancer in the U.S. every year. People who start using tanning devices when they are young are in still greater danger. (more…)

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Nurse Executives & Nail Salons

aanderson_headshotI’ve been eyeing my colleagues’ manicures lately – a wardrobe staple, now that I work in nursing administration. The higher the title, the fancier the nails, it seems. Gone are the days where my closely trimmed, bare nails matched my simple scrubs. Dry cleaned suits and pumps are job requirements, and tasteful manicures seem highly recommended. Recently, I’ve considered picking up the practice, keeping my hands in my lap with rookie shame.

I learned early on in my nursing career that the intensive care unit was no place for manicured fingernails, but administration is a different story. The on-and-off of latex gloves, constant washing, and ever-present hand sanitizer that nixed my polish in a single shift aren’t as present as I walk the halls in my supervisory role. In a week, I might don a single pair of gloves, and although I can’t kick the compulsive habit of frequent hand washing, my work is heavy in polish-preserving tasks like e-mailing and making phone calls.

But after this weekend’s New York Times report on the dangers that NYC manicurists face, I wonder if nurses – bedside and executive alike – shouldn’t take a definitive stand against the practice altogether. (more…)


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  • May 4th, 2015 Meet Dakota Fisher-Vance…she didn’t let cancer derail her
    By Glenna Crooks
  • TBT: Taking A Stand Against the USPSTF’s “New Breast Cancer Guidelines”

    Grace Bender

    On November 11, 2009 we ran the post below. For many this week when the U.S. Preventive Services Task Force released its draft breast cancer screening recommendation it was deja vous.

    As a member of the Susan G. Komen for the Cure Advocacy Alliance Board and a breast cancer survivor, I welcome readers of Disruptive Women in Health Care to read the statement below that was released by Komen as a result of the U.S. Preventive Services Task Force “new breast cancer guidelines.” In addition, please visit the Komen website: www.komenadvocacy.org and take a stand and action by signing the petition and help ensure that all women have access to this lifesaving screening.

    Susan G. Komen for the Cure® Recommends No Impediments to Breast Cancer Screening (more…)


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    Snap to It: Passing the Torch of Advocacy and Change

    Janice Lynch Schuster

    Any given week, one of my five Millennial children is out volunteering for community-based groups, or marching in the streets for social justice. Although I like to think that I had some influence on their propensity to serve and advocate, they deny this. Instead, they tell me, they are driven by motives and experiences that are entirely their own.

    Even so, they were all in grade school when I took them to their first rally: the Million Mom March on Washington to protest gun violence. They were in middle school when I joined a candlelight vigil to protest the war in Iraq, and in high school when I canvassed for Kerry and Obama. Their father, my former husband, played his part, too, having them volunteer at organizations that serve the homeless in our community, and other groups that help vulnerable people thrive.

    It could be, I guess, that children take less notice of us than parents believe (or take notice, for years, of our shortcomings). I have no doubt, though, that my parents influenced me to try to change the world for the better. (more…)

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    SWHR Honors Champions of Women’s Health at their 25th Anniversary Gala Dinner

    swhrThe Society for Women’s Health Research (SWHR) held their annual black-tie gala on March, 25, 2015. This year celebrated 25 years of transforming women’s health. More than 600 guests gathered at the Ritz-Carlton Hotel, Washington D.C. to commemorate this milestone.

    Judy Woodruff was the evening’s master of ceremony. The gala honored the accomplishments of several champions of women’s health, and opened with an anniversary video, chronicling SWHR’s efforts to put women’s health at the forefront of research. (more…)

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