Free the Data Announces New Partnership with Rep.Wasserman Schultz

Sharon Terry

FTD_logo3WASHINGTON, DC (October 8, 2014)—Free the Data, a national coalition of organizations dedicated to freeing genetic information, announced that U.S. Rep. Debbie Wasserman Schultz (FL-23) was named its Honorary Chair.

“The time for hoarding data as a commodity is over,” said Sharon Terry, President and CEO of Genetic Alliance, the nonprofit health advocacy organization that coordinates Free the Data. “The Coalition is thrilled to have a powerful partnership with Congresswoman Wasserman Schultz. In Breast Cancer Awareness Month, we are confident that the Congresswoman adds strength and momentum to the Free the Data movement, particularly as we work to free data associated with breast and ovarian cancer!” (more…)

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The Rise of Consumer Centricity: Comments on the Gamechanging Opportunities

Cyndy Nayer

In commenting on the new IMS Pharma Letter, we highlight the emergence and widespread build up of the consumer’s role in prevention, care and outcomes. Consumer centricity is being driven by the rise of CDHP (consumer directed health plans), but it’s quite different from these insurance products, with their high deductibles and variable co-pays.

Consumers are learning and experiencing more about consumer-directed health plans (CDHP) as they enter the exchanges, even though CDHP has been around for fifteen years or more.  Most new health insurance products have a deductible that must be met, so consumers must pay for services and treatments until they reach that goal.  NOTE:  the ACA (Obamacare) mandates that no individual pay more than $6350 in total out-of-pocket costs in Y2014).  If they have not paid the sum, they will pay more of their own money for the care.

Consumer centricity in health care means that control for choice of service and for outcomes will shift to the  consumers and they will become the ultimate arbiters in their health and health care.  It’s a value-based concept that drives this shift in decision-making. IT supports the data so that the consumer can decide where, when, why and who to choose for care based upon personal preferences and goals, total costs, incentives to engage and time to get to the outcome preferred. (more…)

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Vaccine Injury Stories: the Sacred Cows of the Internet?

When I first started looking into vaccines, I had no idea that an anti-vaccine movement even existed. I came across claims that the vaccines were toxic and dangerous; the diseases, it was claimed, were not. I have some background in science, so I was able to dismiss those claims as inaccurate, but I couldn’t help but be drawn in by tragic, angry and deeply personal stories from parents who claimed their children were harmed by vaccines.

I dared not question them, but I still couldn’t understand…

If vaccine injuries were occurring on a scale like this, why wasn’t anybody doing anything about  it?  And why wasn’t the media reporting on them?

I wanted to know more about these vaccine injury stories but worried it would be insensitive to probe or question their accuracy. I could hurt their feelings or worse, insult their child’s memory. After all, while I (more…)

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Federal Changes in Lab Results Access Can Make Personal Health Management Easier

Terri Prof Headshot 0412Have you ever received a phone call from the doctor’s office with the message, “Hello Ms. X, Your test results are normal.  Make an appointment next year.”?  All you know is what the healthcare provider tells you over the phone.  Maybe this conversation happened in the physician’s office during your visit.  Your doctor swoops in, glances at your test results and breezes through the test results.

If you are healthy and have never had any major health issues, this may be enough information.  You continue on for another year, or 6 months, without a worry.  But, maybe you wonder, “What does ‘normal’ mean?  Can I do anything to improve my health?”  How do you know?  Are you at the high end, the low end, just barely in the range? (more…)

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Celebrating Massachusetts’ Health Reform

Amy CaronRecently Massachusetts announced that the state will not join the federal HealthCare.gov website and will remain a state-based marketplace. Having built and implemented what became the national model in 2006, this is great news. The Massachusetts Health Care Reform Act aka Romney Care changed the national dialogue on solving the issues of health care access, costs, and outcomes and transformed the lives of thousands of Massachusetts’ residents, myself included. (more…)

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An Interview with Amanda Sager

asAmanda Sager graduated from Bridgewater College in 2009 where she received a Bachelor of Science degree in Family and Consumer Sciences with an emphasis on Early Childhood Development. After college, she became the Site Director for the After School program at Cub Run Elementary in Rockingham County, Virginia. After a year at Cub Run, Amanda then moved to Mountain View Elementary in Rockingham County to open the Before and After School program as the Site Director there.  She was at Mountain View for three years before accepting the position as Behavioral Specialist at Spotswood Elementary School in Harrisonburg City. After two years at Spotswood she moved to Thomas Harrison Middle School in Harrisonburg City to work with students with autism. Amanda started at Second Home same time as she started at Thomas Harrison. (more…)

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ER Visits: Is Traumatic Brain Injury on the Rise?

Is it all in your head? Some new research suggests that more and more people are visiting the ER for traumatic brain injuries. A study, published in the Journal of the American Medical Association, analyzed the national trends in ER visits and noted a link in increased number of traumatic brain injuries. The researchers analyzed data from the Nationwide Emergency Department Sample (NEDS) database. This is a database that tracks emergency visits, and the reason for those visits.

What Researchers Found (more…)

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Gender Split in Economic Opportunities Will Lead to Poorer Health Outcomes

Cyndy NayerThe Wall Street Journal published this comparison of gender views of American economic issues, showing women have much less confidence in success. Folks were asked “which view of America is closer to your own?”  The answer to “anyone can succeed,” shows only 37% of women agree, and when compared to men’s responses at 57%, women are showing the overwhelming pressures of lower economic status.

In fact, the answer to the second question is even more disturbing. Sixty-one percent of women say the widening income gap undermines opportunity.  So, in both cases, women feel more economic pressure, more reason to worry about long-term economic security.

 

(more…)

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“Give me your tired, your poor…”

Laura JacobsonThe rapid influx of unaccompanied immigrant children crossing the U.S.-Mexico border in the last few months has spurred a national conversation regarding the United States’ role in offering refuge to these children, the majority of whom are fleeing widespread gang violence and delinquency in their home countries of El Salvador, Honduras, and Guatemala. A key talking point for some in the debate has become the supposed threat to public health that these children pose. (more…)

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Lava Mae

The United Nations states that access to sanitation is a basic human right.  Yet, in the United States the homeless are often forced to go without access to showers. San Francisco is a prime example of this deficit where there are only 16-20 showers to service an estimated 4,500 homeless person population. Today, DW interviews Donnice Sandoval, creator of Lava Mae, a sustainable mobile shower for the homeless in San Francisco. She shows us that sometimes it truly is the simple things that are the most disruptive. 

How were you inspired to create Lava Mae?

Homelessness is an issue I’ve cared about for a long time. I live in a neighborhood that was once predominately middle class African American families. The dramatic gentrification that has overtaken the city has changed that. We’ve watched too many of our neighbors move from their homes to their cars and then the street. I wracked my brain for what we could do but could never figure out how to end or stem the tide of rising homelessness. Then one day I passed a young woman on the street who was homeless and crying, feeling that she’d never be clean. (more…)

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Delete Blood Cancer: What You May Not Know About Bone Marrow Donation

Terri Prof Headshot 0412We all know about blood drives and the importance of blood and platelet donations to save lives. And millions of people are registered organ donors (usually when they get their driver’s license). But did you know that there is another renewable, life-saving resource you could give?  It’s your blood stem cells/bone marrow. Only 11 million Americans are registered with the National Marrow Donor Program to help save lives if their blood stem cells match a person fighting any one of 70 blood cancers and diseases. (more…)

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Tech Will Transform the Doctor-Patient Relationship

The doctor-patient relationship lies at the heart of much Western thinking about health. But only a few centuries ago, most people in the UK never saw a doctor.

During the 19th century, the greatest strides in health and life expectancy came from improvements in nutrition, sewerage and water supply rather than the medics. But by the 20th century, doctors were much better informed about how to treat and prevent a number of illnesses. (more…)

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The Incredible Work Of American Nurses

” Anyone that spends time in a hospital, realizes how incredibly important nurses are, how hard they work, and how under appreciated they are.”- Katie Couric

Check out this clip from the Katie Show where Couric interviews documentary film maker Carolyn Jones about her recent film “The American Nurse”.  Within the film, Jones lets us get a first hand glance into the  healing power of a nurse’s touch.   In an exciting twist, Disruptive Woman Diana Mason was also on the show! There she discussed the need for nurses’ voices to be heard, especially in the boardroom, and  tips to ensure you receive the best care. (more…)

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Patient Engagement: Here to Stay

jessie-gruman picA few years after my treatment for Hodgkin’s lymphoma finally limped to its end in the mid-1970s, I looked back and was amazed at my casual approach to that devastating, life-changing diagnosis: At times I had been completely absorbed by it, every moment governed by the demands of the treatment and illness. At other times, well, the contingencies of life intervened, and I went dancing. Or to class. Or on vacation, with little regard for the risks, the medications and all my doctors’ directives.

How could this be? Why would I take such a chance with my own health, my own (more…)

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The Power of Patients and Systems Evolving Together

Amy CaronWhen I’m asked why I left a sought after career in the fashion industry to get a master’s in public health I have an easy reply, I was a health care ‘consumer’ and I was mad. I was reminded about my experience recently when I read new guidance on immunosuppressant therapy in lupus patients that are in remission. Years ago when I found my perfect balance of diet, rest, exercise, and alternative care I had a long period of remission that prompted me to ask my rheumatologist if we could taper the azathioprine. The response was, “Look, take (more…)

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