July Man of the Month: Farzad Mostashari, MD

Casey Quinlan

July 4 is Independence Day in the United States. Every year, we celebrate an unruly bunch of guys – the ones we now call the Founding Fathers – who, fed up with draconian rule from far away, decided to plant a new American flag and say “we’re running this show from here on out!”

farzad_mostashariThere are plenty of analogies that can be drawn between the patients’ rights movement, healthcare reform, and our Founding Fathers. One of the champions of “data liberación” – the battle cry of healthcare open data efforts – Dr. Farzad Mostashari has consistently called for people, the ones commonly called “patients” by the healthcare system, to have equal rights within the system purportedly designed to help them maintain or achieve health.

From the stage of Health Datapalooza 2015, Farzad threw down a gauntlet to the entire healthcare industry, encouraging every American to declare #dataindependenceday this July 4 by accessing their medical records online.

“We believe that right now is the moment when patient demand for their records will be the ‘unknotter’ of the problem that we have — of the lack of access for patients to take their data and do what they want with it.” ~ Farzad Mostashari, MD (more…)


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Let Freedom Ring

Regina Holliday

The following post ran on May 3 on Regina Holliday’s Medical Advocacy Blog.

This winter was hard for me. Winter always is.  In my mind, I walk through yesteryears and live through the months I lost my husband Fred.

I had a bad cough in January and February just like I had in 2009.  My cough was pertussis this time, not a chest cold.  This time it was my ribs that broke from explosive coughs, instead from metastasis as Fred’s had.

This winter I felt I had to finish my memoir, so while coughed I wrote.  I tied together the story that I have been working on for five years.  This past week it became available on Amazon and it is called The Writing on the Wall.   I had wondered why I felt so frantic about quickly finishing my book on the importance of patient data access, but I have learned not to question such feelings.  I just act on them.

Then I went to HIMSS15 in Chicago.  Then I heard CMS (Centers for Medicare & Medicaid Services) was considering cutting a key measure that affected patients in Meaningful Use Stage 2.  Facilities and Providers complained that they were not able to ensure 5% of patients would view, download or transmit their data in the Meaningful Use Stage 2 reporting window.  Anyway, they assured CMS, patients did not want access anyway.  So CMS proposed gutting the legislation, removing the 5% requirement and replacing it with literally “1” patient. (more…)

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“I will not stop until we have the right to see our own information” – Part 2

The post below original ran May 21 on Ted Eytan’s blog.Ted was one of our very first Men of the Month. See his March 2009 Man of the Month post here.

This is the scene in which I encountered @ReginaHolliday yesterday

Regina Holliday Paint In 55551

That’s her with others, in front of the imposing low-rise brutalistic structure of the Hubert H Humphrey Building which is the headquarters of the United States Department of Health and Human Services (@HHSgov). (more…)

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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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Skin Cancer Myths, Busted: Parts 1 & 2

The following post first ran on HuffPost’s Healthy Living blog and can be accessed here. With summer’s arrival and more time spent outdoors everyone should take a minute to read the information below.

Did you know 10,000 people in the U.S. will die from a preventable cancer this year alone?

That preventable cancer is skin cancer. And yes, we know you’re tired of being told to wear sunscreen, put on a hat, and hang out in the shade, but these practices can be life-saving.

About 3.5 million cases of basal and squamous cell skin cancer are diagnosed in the U.S. each year. Melanoma, the most dangerous form of skin cancer, will account for more than 73,000 cases of skin cancer this year alone. Of those cases, 10,000 people will die [1]. Of those cases, 33,490 are women, and 4,220 of those women will die [2].

This summer, let’s all take better care of our skin, starting with busting some common skin cancer myths.

Myth 1: Putting On Sunscreen Is Good Enough (more…)

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TBT: Healthcare Out Loud

Given Susannah Fox’s first blog post as Chief Technology Officer of HHS (which you can read here) ran yesterday we thought for today’s TBT we would re-run a post from back in 2011. Based on what she was saying then it is clear she is well suited for her new role.

Susannah Fox of Pew Internet talks about Healthcare Out Loud, the concept of people using the internet to gather and share information in a very public way.

Watch video

Susannah presents trends over time as related to internet access in general, for example:

  • Not that long ago in 1995, 10% of American adults had access to the internet, as compared to 75% today.
  • In the year 2000, 5% of American homes had broadband. Today that number is about 66%.

She also discusses how mobile and broadband are multipliers to what people do online, and asks the question: “What’s the ROI on love?”

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WONKY

jessica 1I felt  like I  broke that day in 1986. I hadn’t really dealt with my  trauma(s) since active duty. Numbing and stuffing served me well –for a long time. Oh!! I almost forgot my favorite coping skill: isolation. But I guess that’s  a part of avoidance.

jessica 2Now, I find working with clay keeps me present. It keeps me focused on the here and now, and keeps the intrusive thoughts at bay. The best part is that it’s not one process but several. Strangely enough, process…the part I used to hate…is what has processed me.

Art is a process.  I was an art major, and earned my degree in art. Did I mention I never liked the process? I wanted to have an idea, and have that idea magically spring to life. Immediacy was my drug of choice. The instant, visible, and easy- breezy straightforward kind of life is what I wanted. No innuendo, layered meaning, or metaphor for me, thanks! My life had become one dimensional. I felt safest that way. (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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Jobs of the Future: Not Only for Robots

Lisa-Suennen-photoThe following post originally ran on Venture Valkyrie on June 14.

There is always talk, sometimes tongue-in-cheek but mostly sort of serious, that a lot of jobs will be replaced by robots or computers. Maybe that new iPhone I just bought will replace me by year end. Venture capitalist Vinod Khosla thinks that the most doctors’ current functions will be replaced by algorithms; many believe that lots of white collar jobs, such as lawyers, accountants, and bankers will be replaced by machines with warmer personalities. Venture capitalists have already been “supplemented” with algorithms and, no doubt, there are plenty of people who would like to see us replaced by nearly anything metal—spatula, can opener–if they had their way. In Iron Man we see a world of robot-based soldiers going to war and in real life the echo of that is not so far off.

Army prototypes

So if those jobs are going away and machines run the world of money and more, where are the opportunities for our kids and those now looking for their next career? Well, the good news is that there will still be a need for people in the future (whew!), and service jobs of all kinds will be high demand. While there is not yet a big call for valets to care for our robot overlords, it does appear that demand for medical workers will continue to drive job growth for a long while to come and thus the healthcare system will be largely free from total robot takeover.

Of the nearly 3 million new jobs added in 2014, about 10% of them came from the healthcare sector. That’s a pretty big number and actually is a bit worrisome when one thinks about how closely our economic health as a nation is tied to growing healthcare labor costs. If we are too successful in our national quest to cut healthcare costs, we may find ourselves killing new job growth and tanking the economy. Irony is a bitch. (more…)

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June Man of the Month: Justin Vandergrift

Justin_cropped_300Just in time for Father’s Day, meet Disruptive Women in Healthcare’s June Man of the Month, Justin Vandergrift. He gets our vote for “Dad Extraordinaire!”

When Justin and I met, he’d just spoken on a panel. In his remarks, he said his daughter didn’t need the best doctor. That stopped me. Cold. He said what? Did I hear that right? A Dad saying his daughter did not need the best doctor? What he said next answered my questions, but I wanted to learn more so we talked afterwards.

Justin, as you continued with your story about Kathryn, I found it compelling. The wisdom you shared was unlike anything I’d heard before.

This is what I’ve learned caring for Kathryn: she does not need the best doctor, she needs a doctor with the best access to information.  With so many diseases and conditions today it would be hard – if not impossible – to find the best doctor. The best doctor isn’t what everyone needs. What everyone needs is the doctor who has access to the best information. There are many therapies that work for patients, for example, but are often overlooked because they are not a medication.  If there were better ways to quicker diagnoses and a therapy produced results, then I would want my doctor to know, wouldn’t you? These are ‘boots on the ground’ solutions that can make a difference for you or your child. This is what we should be seeking. (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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Tomorrow is National Eat Your Vegetables Day

National Eat Your Vegetables Day(celebrated annually on June 17) is a day when we are all encouraged to eat vegetables for every snack and every meal. To help you prepare to celebrate the day we wanted to share the infographic below which depicts different color vegetables with their corresponding vitamins and nutrients, how many calories per serving each has, and preparation suggestions. Be sure to eat your veggies tomorrow, and everyday actually! (more…)

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Avoiding the Doctor? It’s Time to Man Up and Get Checked Out

Terri Prof Headshot 0412Do you know someone who should have seen a doctor years ago? Maybe it’s your husband, or your father, or your brother, even your son? They complain about the shortness of breath, the nagging cough, or the stomach pain. But they never take action. For some men, so decisive at work or within the family circle, the lack of motivation to get an illness or symptom checked out is surprising. In fact, men are 24% less likely to have visited a doctor in the past year than women. Seeing a doctor is scary and it makes them feel weak and out of control.

Roald Bradstock was one of those men. An Olympic athlete who trained 3 to 4 hours a day, ate pretty well, didn’t smoke and felt fine, but was afraid of needles and had been avoiding the doctor for years. Why should he subject himself to an uncomfortable experience when there was nothing wrong? His wife encouraged him to go for a checkup. Her involvement with the medical testing industry had given her insight into the value of prevention, getting baseline testing, and understanding your risk factors to take the best possible care of your body for the long haul. But it took years for her advice and encouragement to finally get through to him. It took a visit from his mother in 2009, and her encouragement, to finally push him to have some basic medical tests done. (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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