By Robin Strongin. E-Patient Dave:  One Patient Advocate’s Survival Story and What We Can Learn From Him—How to be an Empowered, Engaged, Equipped and Enabled Patient

Photo by Roger Ramirez, Chariot Photo. License: Creative Commons Attribution ShareAlike 3.0

Richard Davies deBronkart Jr , known by many as e-Patient Dave, is a cancer patient and blogger who, in 2009, became a noted activist for health care transformation through participatory medicine and personal health data rights.  In 2010, he became a published author and Disruptive Women in Health Care’s August Man of the Month.

I was a middle-aged guy going through life, as involved with my own health care as I was with my car’s carburetor, which is to say, virtually not at all.  And then I found out I was almost dead.

That’s how my interview with Dave started. 

Dave was diagnosed in January 2007 with Stage IV, Grade 4 renal cell carcinoma (kidney cancer) at a very late stage. His median survival time at diagnosis was just 24 weeks; with tumors in his lungs, bones, and muscle tissue, his prognosis was dire.  Now, almost four years later, e-Patient Dave has emerged as a patient advocate, with a self-described calling to connect, engage, and empower patients.

Dave had been proactive for years when it came to choosing providers he liked, so when it came to crunch time, he  was fortunate on several levels: he received excellent treatment at Boston’s Beth Israel Deaconess Medical Center; his physician, Dr. Danny Sands, who in addition to serving as Dave’s primary care doc since 2003, also serves as the Senior Medical Informatics Director at Cisco and as such is on the bleeding edge of online communications and health information technology; and, the Biologic Therapy program helped Dave participate in a clinical trial for the powerful High Dosage Interleukin-2 (HDIL-2). His last treatment was July 23, 2007, and by September it was clear he’d beaten the disease. His remaining lesions have continued to shrink.

Technology and Patient Advocacy:  An Author is Born

Dave observed that many patient advocates come to patient advocacy because they were injured, or had a negative experience with the health care system.  This was not the case for Dave.  He had a life altering experience; a near fatal disease that rather than kill him, turned his life in a different direction.

Before his diagnosis, Dave was a savvy online guy. “I’ve been online since 1989, heck I even met my wife online.  So it’s no surprise that I ended up with a cutting edge academic medical center and physician.”

While the health professionals, life saving medicines and medical technologies were key to his survival, so too was the Internet—it became another of Dave’s lifelines:

• Dave was able to communicate with his primary care physician by email and his hospital was committed to making information available electronically;
• Dave used the web to access information about his disease;
• He joined the Association of Cancer Online Resources, an expert patient community; and
• A participant in online communities before his illness, Dave quickly figured out that using online technology to update his friends and family not only provided an efficient means to communicate what was happening and how he was doing, but it connected him to a great number of people who cared about him, supported him, were there for him.  He started an online journal and support community on CaringBridge.

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By Robin Strongin.

Paul F. Levy, Disruptive Women’s June 2010 Man of the Month, was appointed President and Chief Executive Officer of the Beth Israel Deaconess Medical Center in Boston in January 2002.  BIDMC is one of the nation’s preeminent academic health centers, providing state-of-the-art clinical care, research, and teaching in affiliation with Harvard Medical School.  Previously, Mr. Levy was the Executive Dean for Administration at Harvard Medical School, where he was responsible for administrative, budgetary, and facility issues, as well as community and governmental relations.  He was also involved in coordinating collaborative ventures between HMS and its affiliated hospitals.  Before joining Harvard Medical School, Paul Levy was Adjunct Professor of Environmental Policy at MIT, where he taught infrastructure planning and development and environmental policy for seven years.  Mr. Levy has served as Executive Director of the Massachusetts Water Resources Authority, Chairman of the Massachusetts Department of Public Utilities, and Director of the Arkansas Department of Energy.

Ever since I created the Disruptive Women in Health Care blog, I wanted to meet Paul Levy.  Who was this guy who boldly started blogging when most executives in health care either didn’t know what blogging was or were frightened by legal into thinking that blog was a 4-letter word?  His blog, Running a Hospital, is “a blog started by a CEO of a large Boston hospital to share thoughts about hospitals, medicine, and health care issues.”

I recently spoke with Paul and the first thing I asked him was Why Blog?  Here’s what he had to say:

Why did you decide to blog?  Was there one incident that propelled you, an aha moment, or had you been thinking about it for a while? Paul simply said, “It was a lark.”  He explained that in August ’06 he was reading a New York Times article about how executives don’t blog.  “Being a contrarian, I started blogging.  It was an excuse to learn.”  Paul mentioned that the Boston Globe took notice, wrote about his blogging and then it was “off to the races.”  He added that he’s obsessed by blogging…in a good way.  “It helps consolidate my thinking.”

As you reflect back over your years of blogging, what have you learned? “I hadn’t realized the power of blogging until I actually did it.”  He gave me an example: One of his top priorities at BIDMC is a major emphasis on quality and safety, eliminating preventable harm.  Paul experimented by using his blog to publish infection rates and clinical outcomes. “I didn’t worry or think about how unusual it was—I just did it.” [Pretty disruptive of him—I knew I liked this guy]. He discovered that the blog served as “an incredibly powerful, transformative management tool.”  The blog became the vehicle that allowed everyone in the organization to see the data, to see how they were doing.  An audacious goal was established, and the blog enabled everyone in the hospital to track progress. According to Paul, publishing the data on his blog helped foster the desire to meet the goal.  “The approach was well received and appreciated. And, it created no legal problems.”

Since last week’s Health 2.0 conference in Washington DC was fresh in my mind I asked Paul, What do you think of the blossoming Health 2.0 phenomena…what is it’s promise and what work needs to be done? He once again stressed that the value of Health 2.0, and social media in general, lies in the ability of these tools to provide a way for people to share and exchange data, information and ideas. “They support a community of interest.”

We talked for some time about how unfortunate it was that health care companies, particularly those in the life sciences, fear they will be criticized—or worse, if they take the social media plunge.  We also agreed that the real power of these tools reside in patient advocacy—enabling people to actively participate in their own health.

I have to ask—health reform—as a veteran of the Massachusetts experience, what do you think about where we are and where we are headed? “Massachusetts is prologue for the country as a whole.  We certainly had a head start with reform, likewise with the cost implications.  We are working through all that.”  Paul stressed to me that the costs were under-estimated in the law and the delivery system is still a mess.  He doesn’t see the government fixing that. “We won’t improve the delivery system by government fiat; it has to come from the profession.”

Any words of wisdom to share as we conclude our conversation? “Please, be disruptive… disruption and imagination are the driving forces for change.”

Thomas Maeder, our May 2010 Man of the Month, is the author or co-author of twelve books and numerous articles in national publications, and has long experience in the biomedical field as a writer, educator, and consultant. Below, he shares his thoughts on rare disorders and their place in the drug market.

Orphan Diseases – Bellwether of Health Care

“The only people interested in rare diseases are those who have them, and that’s not a lot,” an editor once told me when rejecting my proposal for a book on orphan diseases.

In reality, nearly thirty million Americans – one in ten – suffer from some 7,000 rare diseases, making them collectively very common indeed.  Though they differ wildly in their causes and manifestations, they share many characteristics in terms of the uncertainty, isolation, and costs imposed upon sufferers and their families, the challenges they pose for our health care system and sense of social responsibility, and their potential value to medical research.

In the United States, orphan diseases were defined by the Orphan Drug Act of 1983 as those that affect fewer than 200,000 people domestically.  This landmark legislation offered incentives – tax credits, a period of market exclusivity independent of patent protection, research grants – for manufacturers to develop clinically valuable treatments that would not be economically viable in the normal pharmaceutical market.  Previously there had been tragic instances of known, potentially useful therapeutics never taken to market, or others of already proven effectiveness that were withdrawn, because they did not meet a drug company’s threshold of profitability.  The definition encompasses some familiar disorders, such as cystic fibrosis, muscular dystrophy, hemophilia, Huntingdon’s Disease, and Crohn’s disease, along with thousands of much rarer conditions, including fibrodysplasia ossificans progressive (FOP), Jumping Frenchmen of Maine, and Sakati Syndrome, or acrocephalopolysyndactyly type III, which for many years was represented by a single patient in Saudi Arabia.

In less than thirty years since passage of the Act, more than 300 orphan drugs have been approved for market.  Some are produced by large pharmaceutical companies.  The biotechnology industry also benefited tremendously from the orphan drug market and its incentives.  In addition, as one pharmaceutical executive told me, big drug companies may need billion dollar drugs to support not only R&D but also massive corporate infrastructures and the sales and marketing machinery, but a small company aiming at a well-defined population, with a small number of specialized physicians and facilities, patient advocacy organizations, and unusually motivated patients, can get by quite nicely on mere tens of millions of dollars in revenues.

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After watching his parents and six siblings die from undiagnosed, untreated diseases, Peter Kithene vowed not to let that happen to other families. “I want to give kids their parents and give kids their lives,” he tells Disruptive Women.

While a college student at the University of Washington, Peter opened the first Mama Maria clinic in his home village in Kenya. He now has two clinics, three small out posts and just finished a business plan to open a third.

He wants all people in Kenya to have accessible health care.

Disruptive Women is proud to name Peter our April man-of-the-month.

He took a few minutes to speak with Disruptive Women’s Wendy Grossman.

Q: I read that by the time you were 12 — both your parents and six of your siblings had died from undiagnosed diseases? Is that correct?
A: Yes.

Q: What happened?
A: They got sick. At that time I didn’t know a lot. I was a kid myself. The kids got sick and died when they were young.

What I saw, what stayed with me until today, was my brother (who is still alive) almost died. He got very sick and had meningitis. Nobody knew what was going on. There were no laboratories to take him. When his illness got very serious, we traveled very far with him. And they said, ‘This kid has two hours to live. If we don’t get him to the hospital now, he’ll die.” They had an ambulance 15 miles away, and they drove across the border into Tanzania to a hospital there. And they treated him and treated the meningitis. Then he ended up losing his hearing and speech — he became deaf. This was a really talkative kid.

I just saw that, he could have died. If there wasn’t an ambulance and a reliable place to take him, and a hospital, he wouldn’t have lived. He lived. And after I opened the clinic, I saw kids coming in with the same illness, the meningitis. But we are able to treat it, and they got to go home and they don’t become deaf like my brother.

And lives are saved.

The other ones who died I don’t know what they died from. And then my parents also died. They really wanted to go to hospital. They needed the care, but there was no place to take them. Or the places they could go were just too expensive. Nobody could afford that.

Q: Is it just you and your brother now? Or do you have other siblings?
A: Me and my two brothers and one sister.

Q: Wow that’s a lot of kids your parents had. Tell me, why did you start the clinic Mama Maria? I read that your work is, in a way, avenging their deaths.
A: Avenging their death. No, I don’t think it’s avenging. It’s just giving life opportunities to people. I got a chance. I had the dream after my parents passed on — my dream as a kid was to get a place people could go to when they’re sick and get treated.

With that dream in mind, I worked so hard. Every step I made along my way from the village and everywhere I went was in doing that. I was volunteering as a kid in clinics and visiting with the sick in their homes.

It’s a dream I had at a very early age.

Q: Did you want to be a doctor?
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Disruptive Women welcomes nationally recognized Intensive Care Specialist Dr. Brian Rosenfeld, as our March 2010 Man of the Month.

Dr. Rosenfeld is an Intensive Care Specialist (intensivist) who pioneered and developed the concept of remote intensive care unit management. He co-founded VISICU Inc. in 1998 with his partner Michael Breslow and served as its Executive Vice-President and Chief Medical Officer. The company had a successful IPO in 2006 and then was acquired by Royal Philips Electronics in 2008. He is currently responsible for devising the strategic direction of tele-health within Philips Patient Monitoring and Informatics.  Prior to founding VISICU, Dr. Rosenfeld was an Associate Professor of Anesthesiology and Critical Care Medicine, Medicine and Surgery at the Johns Hopkins University School of Medicine.  While at Hopkins, he was Director of two critical care units and received the Shannon Award from the National Institutes of Health.

Disruptive Women’s Robin Strongin recently had the opportunity to talk with Dr. Rosenfeld.  A few minutes into their conversation, says Robin, one thing becomes very clear:  Dr. Rosenfeld’s absolute passion for real-time, proactive, quality patient care.  In other words, telehealth—the technology behind Philips-VISICU.

As a cofounder of VISICU, What triggered the idea?

The idea was the easy part.  Developing a company was the hard part.  Before we started what was essentially a software company, I was an attending physician at Johns Hopkins Hospital.  Ironically, I almost had my privileges removed by my ICU colleagues because I initially refused to use the new EMR (electronic medical record) that had just been installed in the surgical ICU.  In the end, though, I recognized the power of information technology as it relates to patient care, high quality patient care.

My epiphany came as I realized that the current trajectory of baby boomers, and their need for ICU level care, was quickly overwhelming an already tenuous system.  ICUs account for 50% of all hospital deaths and approximately 30% of hospital costs; and many of them do not even have an intensivist involved in care delivery. There simply weren’t enough intensivists to meet the needs of this growing demographic group.

But there was a solution:  by utilizing technology and redesigned workflow to leverage the knowledge of intensivists in a way that reached exponentially greater numbers of patients.  By installing two-way audio/video connections and providing the appropriate information technology necessary to remotely monitor and intervene on patients, these highly trained physicians and critical care nurses could be on hand to provide care to many more patients in multiple sites across any geography. Virtually. Approximately 10% of all adult ICU beds in the United States are now monitored and managed with this technology.

What are the benefits of remote monitoring as you see them?

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Disruptive Women welcomes Personal Trainer Morris White as our February 2010 Man of the Month.

A personal trainer for 22 years, Morris White has both men and women – and even children as young as 12 – as clients. He helps them with basic fitness, sport-specific fitness and self defense. He also trains people with special needs, including those with disabilities and eating disorders, and those recovering from a stroke and heart attack.

In his own life, he is a power lifter and a practitioner of Kung Fu, Yoga, desert hiking and survival quests and sustainable healthy living. He is currently working on a fitness community site.

I can vouch for his impact. I’m now in my third year with him, with regular work outs at 6 AM. The benefits have been worth every trek to the gym in those before-dawn hours.

Morris, I’m pleased to have the chance to talk about fitness with you. It’s an important topic, but rarely addressed in this blogspace. How did you get started training?

There were three very influential men in my young life. It was the 1970’s. My Father was a pharmacist and successful businessman who took me to monthly Toast Masters meetings and had me working in the pharmacy on weekends. He taught me the importance of physical poise and presence. One of his business partners was a Physical Therapist who mentored me in anatomy and exercise, from him I learned about anatomy and body mechanics At about that same time, I was introduced to Kung Fu by my best friend’s Father who was a Master of the art.  Kung Fu combined all the earlier lessons and helped me to develop my personal philosophy on holistic personal training.

Those were the years of my greatest lessons.

I attended Temple University but my advisors could not grasp what I wanted to become and what I wanted to do with my life. The usual response was, “So, you want to teach phys ed?” No.

From there to the gymnasiums I went, working under different titles until personal training evolved and became popular.

 What about fitness and training makes it your passion? 22 years seems a long time.

Seeing my mother die at young age and my father debilitated primarily by an unhealthy lifestyle, has made me even more intent to give meaning to my existence by living and enjoying life to its fullest and helping others to do the same through fitness.  The bonus is that by helping others achieve their personal goals, I get to meet great people that, in turn, enrich my life through their collective experiences and wisdom.

How do you approach training?

My philosophy of training is:

• Safety first. You should never be harmed or injured in the course of training.

• Strict, proper form. The best form produces the best, most efficient results.

• Keep moving. A body in motion tends to stay in motion.

Follow those rules and you’ll keep at it, making progress. You’ll avoid injuries and won’t suffer any set-backs in your workouts. You’ll also see results and be able to have an increasingly better quality of life. Even if you’re already fit, you’ll see improvements.  As I like to say to my clients, “one foot in front of the other and you’ll get where you’re going,”

Oh, and one more thing, never imitate what you see others doing in the gym.  So many people do their exercises incorrectly. Others may do an exercise properly but their routine may not fit your desired goals.  Always consult a professional about a new exercise or routine.

Do you have any dramatic examples of client improvements?

I could tell lots of stories of women who come to prepare for their weddings. They’re motivated for sure. Believe it or not, they’ve bought dresses three sizes too small and now need to fit into them. Plus, the regular workouts really help them with the wedding-planning stress.

But the one client and story that really inspired me was a 280 lb sedentary banker who lost the weight and became a marathon runner.

As he became physical healthier, his self-confidence and self-esteem also improved.  This newfound self-respect gave him the strength to not only run a marathon but to walk right out of a less-than-supportive, troubled relationship and climb the corporate ladder to a promotion.

(Laughing) Of course, I cost him lots of money – he kept having to replace his wardrobe as his body changed.

Have you ever seen anyone who did not see an improvement in working out with a trainer?

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Disruptive Women is thrilled to announce our January Man-of-the- Month, Greg Simon, Senior VP of Worldwide Policy at Pfizer.

Greg has served as a senior congressional staff member in both the House and the Senate, was the chief domestic policy advisor to Al Gore, and is past president of Faster Cures.

And now, Greg is Senior Vice President, Worldwide Policy, Pfizer Inc. As such, he leads a global team of professionals in a number of areas including (1) worldwide government policy (2) science policy (3) economic policy and research and (4) international policy.

At the moment, Disruptive Women was interested in his role advising Pfizer’s CEO about the company’s involvement in health care reform.

Greg shared a DVD of a recent speech he presented at a Pfizer legislative conference. In a 25-minute talk we saw why he’s so good at enacting legislative change — he exudes energy and enthusiasm—and he cares about patients. As a motivated, savvy policy and legislative expert, when he talks, you just feel like the right changes are going to be made. Soon.

“Healthcare reform should be about patients,” he told the audience.

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This month, Disruptive Women welcomes Scott E. McFarland, Cleveland Clinic’s President of Wellness, as our Man of the Month.

Q.  For the first time ever, a nation’s top hospital is focusing its medical expertise on a consumer approach to wellness that is showing promise at helping people change their lives for the better, and you are leading this disruptive healthcare strategy for the Cleveland Clinic.  Why you?

A.  I have a unique blend of consumer marketing, healthcare, technology and legal experience.  I “get” consumers, and I “get” how an established brand can connect and extend its brand promise with new consumers without alienating its foundational constituencies.  Over my career, I have consistently delivered highly-respected results and outcomes with web-based risk-indexing healthcare services and business models that empower patients and consumers by encouraging self management.  Admittedly, I am more of an opportunist than a strategist, and I seem to have a “knack” for fusing innovative consumer ideas related to health and wellness with technical applications.

Q.  How do you take a highly-respected science and medical brand like Cleveland Clinic and launch it into channels that reach consumers?

A.  As any brand professional will tell you, launching successfully into new channels with no collateral damage to the current brand image and the present brand promise, is tricky.  360-5 from Cleveland Clinic is the endorsed brand approach we are implementing.  The online manifestation of this endorsed brand is www.360-5.com.  We are thrilled to extend the expertise and wellness practices of the Cleveland Clinic to a broader audience of wellness seekers online.

Q.  360-5 is a “catchy” brand.  What does it mean?

A.  360 degree wellness, 365 days a year.  “Total Wellness, Every Day” is our tag.  Everyone smiles when they say it, which is my test for a successful tagline!

Q.  What is your idea of wellness?

A.  Great question.  Wellness is difficult to define.  It is deeply personal.  Consciously or unconsciously, wellness seems to have balance and actions that help create or promote balance at its foundational core.  At www.360-5.com, we strive to arm patients, caregivers, consumers and physicians with truthful, fresh, inspiring and actionable wellness solutions for everyday living. Our team, led by Cleveland Clinic Chief Wellness Officer and New York Times best-selling author, Dr. Michael F. Roizen, has brought together mind, body and food solutions into a uniquely holistic package. That means at 360-5 we’ll show you how and why you can sleep better or have more energy, among many other topics, by looking at how you handle stress, your exercise habits and diet.

Q.  Interesting that the Cleveland Clinic, ranked as one of the “Best Hospitals” in America and No. 1 in the nation for heart care and surgery by U.S. News & World Report, would deploy a healthcare strategy that departs from its deep medical and surgical roots and revenue model.  Can wellness thrive in an academic medical center environment where invasive procedures pay the bills and keep the lights on?

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This month, Disruptive Women welcomes Patrick F. Terry, a self-proclaimed “JAD” (Just A Dad), as our Man of the Month.

Q: So, where should we start? You have been involved with founding a number of ground breaking biotechnology companies, life science research foundations, trade associations, philanthropic groups, and a whole host of public policy organizations.

A: I enjoy thinking ahead and trying to do the next new thing to advance science, biomedical research, and the business of patient-centered health care. I’m very impatient for change. I consider myself an unrepentant insurgent, renegade, and rabble rouser. I think that is the most powerful disruptive technology there is. That’s why I love the Disruptive Women in Health Care Blog.

But honestly, everything I do is in a lame attempt to keep up with my wife, Sharon F. Terry. She is one of the Disruptive Women Authors and a force of nature like the others here.

I have been burdened with the ability to visualize the dynamics of highly complex systems (like the health care enterprise) and make sense out of navigating or reorganizing aspects of the system to create new efficiencies. U.S. health care is the most inefficient and expensive system ever conceived of and implemented in the history of the planet. It is a wonderfully disturbing playground for a person like me. So, as a coping mechanism I have to create new organizations and social systems to help drive change and innovation.

I have been lucky to be associated with some really brilliant and creative people. For example, the great group who I worked with to start Genomic Health [NASDAQ: GHDX] and apply innovative clinical genomics to successfully change the standard of care for breast cancer in record time. I learned a ton from all the talented people there and from that commercial experience. It made me audacious about what was possible in the new era of optimized precision medicine, personalized medicine, technological innovation, and new approaches to health care delivery.

Q: So, why are you doing all these different things?

A: My kids made me do it! No, really they are the reason I do what I do today. A little over a decade ago, my two children were both diagnosed with a rare genetic disease a few days before Christmas. My wife and I were blown away. The diagnosis was traumatic. In hind sight, it was a seminal, life altering event. It had a profound effect on me as a man, a father, and a husband. At the time, I considered myself a failure at each. What could I do for my kids now? As a young Dad, I completely bought into the archetypal role of supporting, protecting and providing for my family. It was all I thought about. It gave me a clear purpose in life. So, after a few weeks of trying to cope with the emotional rollercoaster of my kid’s diagnosis, I decided to try to find a treatment intervention for their disease. That was the day I decided to do the improbable, potentially the impossible – tame a genetic disease. Take on the system as Just A Dad.

Q: What did you do next?
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October is National Disability Employment Awareness Month and to celebrate, our Man of the Month is Paul Berger. Paul is the award-winning author of “How to Conquer the World With One Hand… And an Attitude,” chronicling his adventures in returning to work and to a meaningful life after suffering a severely disabling stroke at the young age of 36.

On Wednesday, Paul spent the day with about 100 other dedicated stroke and heart disease advocates visiting members of Congress to urge enactment of legislation to make health insurance more accessible, affordable, and adequate. Paul’s stroke is one of those “pre-existing conditions” that can make insurance inaccessible and unaffordable. And many policies have inadequate benefits to cover the rehabilitation services needed after stroke—speech, physical and occupational therapy services that should extend for months—not weeks—as long as the patient continues to show progress.

Many stroke survivors like Paul have insurance that is tied to their disability status. So the goal of returning to work is complicated by the specter of losing health insurance that is not available or affordable through the prospective employer. While Paul could not return to his pre-stroke profession—a public policy advisor in urban redevelopment—he persisted in finding employment. First as an accounting clerk, then returning to school to learn computer-aided drafting, and later as a publisher and motivational speaker—despite his continued post-stroke speech problems (“aphasia”) and right-sided paralysis.

Paul runs his own company, Positive Power Publishing, where he proves everyday that stroke survivors and other people with disabilities can be productive, tax-paying members of the workforce, doing jobs well beyond the imagination of most rehabilitation professionals and vocational counselors. Paul’s message to others, “If I can do it, you can do it too!”

To learn more about Paul’s inspirational journey, visit his website, www.strokesurivor.com. To learn more about National Disability Employment Awareness Month, visit the Department of Labor’s site: http://www.dol.gov/odep/faqs/ndeam.htm.

This month, Disruptive Women welcomes The Rev. J. Bennett Guess as our Man of the Month. Rev. Guess is a special choice for this honor, because he’s not specifically a member of the health care community. But as Director of Communications for the United Church of Christ, he is taking on health care reform as a moral issue with a push for action called 100,000 for Health Care.

On June 26, 2009, the Twenty-Seventh UCC General Synod passed a resolution calling for advocacy in support for Health Care For All. Some people may be wondering why this issue was so important to the UCC that a resolution was called for. Let me show you an excerpt from the Pastoral Letter to UCC members, to explain:

[The] familiar story of the Good Samaritan in Luke’s Gospel makes a clear case for universal access to health care. Jesus reminds us of what it means to love our neighbor; it means we stop and assist in a caring manner that nurtures the neighbor back to health and wholeness. Persons in need are not to be passed by, nor are they to be left abandoned and ignored by the side of the road. (Read the entire Pastoral Letter here.)

Our faith teaches us that health care is a both a human need and a human right. Offering comfort to the broken, sick and injured was foundational to Jesus’ ministry and is central to our serving the least among us. That’s why we are adament that our nation deserves a health care system that is inclusive, accessible, affordable and accountable. To us, health care is not a liberal or conservative issue… it’s a moral issue.

Just consider:

• Over 47 million people (one in six) and over 9 million children are without health coverage and 25 million more are under-insured.
• Every year, 18,000 people in the United States die from a lack of health insurance—that’s two people every hour.
• More than 60 percent of all bankruptcies are linked to medical expenses. About 1.5 million families lose their homes to foreclosure every year due to unaffordable medical costs.

As members of the United Church of Christ—and as members of the human race—we think this is unacceptable. And we’re doing something about it.

Our campaign is called 100,000 for Health Care. Our hope is to send 100,000 email messages to Congress and also deliver this huge book of 100,000 names to the Democratic and Republican leadership in Congress. Together, speaking as people of faith, we know we have the power to change the conversation and envision a society where each person is afforded health, wholeness and human dignity.

Of course, you don’t have to be a UCC member or a member of the Christian faith (or any faith, for that matter) in order to help. If you agree that health care is a basic human right, then please sign our petition and spread the word. We’re counting on the force of 100,000 signatures as something that our leaders can’t ignore. Let’s be disruptive together!

Disruptive Women is pleased to make Dr. Steven Wartman,  President and CEO of the Association of Academic Health Centers, our August Man-of-the-Month. He sat down with Disruptive Women’s Wendy Grossman in his office to talk about the Association of Academic Health Centers’ work on Capitol Hill, health reform, his new blog, missing students and patients, and why he became a doctor.

Q: Tell me about AAHC and your work in Washington DC.

A: First, let me start by describing what constitutes an “academic health center.” It is an accredited, degree-granting university that consists of a medical school, one or more other health professions schools (such as nursing, dentistry, pharmacy, allied health, etc), and a relationship with a teaching hospital or health system. Examples in the immediate DC area include: George Washington, Georgetown, Howard, and the Uniformed Services University of the Health Sciences. In addition to their missions of health professions education, patient care, and research, academic health centers are also economic engines for their communities and often are among the largest employers in their region. And the products from their research have a lot of value in the commercial world, leading to the development of new treatments.

Q: What’s the most important thing you’ve done since you’ve been AAHC’s President?

A: Set a strategic direction for the organization.

Q: Which is what?

A: Our strategic direction is based on three founding principles: in all we do, we wish to strengthen, advocate and lead on behalf of the nation’s academic health centers. Specifically, in addition to general advocacy, we’ve prioritized three main areas: the organization and management of these highly complex enterprises (whose budgets often run into the billions), the health professions workforce (having enough of the kinds and types of health professionals that the nation needs), and the regulatory environment (trying to harmonize the numerous regulations that impact academic health centers in their mission areas of education, patient care, and research). As one example of the impact of regulation, we’re actively involved in assuring that clinical trials, which are critical for testing new therapies and procedures, can be conducted efficiently with proper protection of patients.

Q: How has your job changed since President Obama took office?

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This month, Disruptive Women welcomes Andre Blackman, Health Communications Analyst at RTI International, a non profit research organization, as our July Man of the Month.

Andre Blackman has an extensive background associated with science, technology and public health, conducting research in institutions such as the Naval Research Lab, NASA and WESTAT. This merging of technology and health has proved helpful in his current work in Health Communications.

Andre is very passionate about the role of new media, mobile technology and other emerging technologies as it relates to health communications and public health in general. You can find his thoughts on the intersections of health and technology through his blog, Pulse + Signal and via Twitter.

The past few years have seen a significant increase in the use of emerging technologies to improve public health all around the world. From grassroots initiatives empowering citizens in low-resource areas to making sure consumers get the healthcare they need – changes are happening for the better. This article will aim to look at a specific area of the ‘citizen empowerment’ – the application of SMS (Short Messaging Service – or texting) and mobile phones in public health.

With the onset of social tools such as social networking sites (Facebook, Myspace, etc.) and real time information hubs such as Twitter, we are exposed to numerous ways to stay connected to each other. Our mobile devices are equipped with applications that allow us to do a myriad of things – many of which focus on entertainment and productivity. Another very important part of our lives is maintaining good health and the mobile phone is making strides in that area. mHealth is the term that has been coined to describe the interaction of mobile technology with the improvement of health.

mHealth is exploding onto the scene as the next big technology boon for public health – the main reasons this is true are twofold: ease of implementation and relative low cost of operation/maintenance. This is especially true in the developing world and in low-resource areas where technology options are relatively sparse. The use of SMS has become a tremendously powerful way for health clinics in Africa to communicate with their community health workers who are traveling to villages to tend to patients. Imagine the ability to significantly reduce fuel consumption and get real time data on medical adherence in a world where it make take several weeks to get this information.

All of that from a technology that for many of us in the developed world may take for granted.

A few months ago I presented this information at the North Carolina Division of Public Health – here is the presentation that touches on the basics of mobile technology and how it can be applied to the public health landscape. It is by no means comprehensive but gives a good idea of where things are and thoughts on where things can go in the near future.

Private sector organizations such as Voxiva have been taking the lead on mobile initiatives, especially in health. Nonprofit organizations and local health departments have also been dipping their toes into the use of SMS technologies to get health information out to residents. The government has also become a supporter of mHealth initiatives and the Centers for Disease Control and Prevention (CDC) continues to innovate in this area. Several weeks ago, I wrote about a hypothetical situation in which public health could benefit from a mobile application called The Extraordinaries, which uses the free time of consumers to volunteer their time for good.

From a recent article on mobile communications in health via Mobileactive.org:
“Mobile provides a fantastic channel for communication,” said Erin Edgerton, senior social media strategist at the CDC. “It’s always on, always with you and provides personal access to information.”

I heartily encourage you to begin exploring this venue of health communications and figure out how you or your organization can integrate strategy with mobile technology.

Additional Articles/Resources:

Mobile Active – a great starting point for learning about using mobile technology for social impact. Contact them with any questions

PopTech – Can Your Cell Phone Change Lives? My article on mHealth

Texting4Health – conference and newly published book

ISIS initiative – sexual health information/STD prevention through SMS technology

This month, Disruptive Women welcomes Brent Shafer, CEO, Philips Electronics, North America, as our June Man of the Month. Below, he shares his thoughts on the funding of healthcare reform.

After years of stops and starts when it comes to healthcare reform, it appears that we are now moving forward at lightning speed. Perhaps so fast that we are trying to change a complex system without the required due diligence needed to make sure that we preserve what works. It has always been the conventional wisdom of most policy makers that true reform needs to be done incrementally, not in one giant overhaul. The growing number of Americans without access to healthcare has increased the urgency to “do something.” Although many are frustrated with what has been perceived as “all talk and no action”, pushing for health reform at ANY cost is not necessarily the answer either. The projected price tag to overhaul the system—$1 to 1.6 trillion dollars—is staggering. And, frankly, the $1 trillion dollar question is no longer “what do we need to change to make it better” but “how are we going to pay for it?” So while we are busy talking about everything we want to add to the system, the strongest undercurrent on the Hill right now is what needs to be taken away in order to pay for everything.

Medical imaging, for example, is one of many “pay-fors” currently on the table. The Obama Administration has proposed that Health and Human Services (HHS) base reimbursements for advanced imaging services in non-hospital settings on the assumption that physicians operate imaging equipment 95% of the time that the office or freestanding imaging center is open . Because of the way the formula is calculated, this proposed change will drastically cut payments for services already significantly impacted by reductions in reimbursements from several regulatory and policy changes, including the Deficit Reduction Act of 2006. The Administration has focused its proposal on one data point in an extraordinarily complex formula and did not consider other factors such as the way CMS maintains the budget neutrality of the Physician Fee Schedule (PFS) and the way it calculates payments for overhead and indirect costs for PFS services. All of these factors, when viewed as a whole, actually undervalue imaging services, instead of overpaying as assumed by the Administration.

As pointed out by the Access to Medical Imaging Coalition, the President’s proposal is similar to past ones advanced by the Medicare Payment Advisory Commission (MedPAC) which were based on a survey that relied on data from only six urban medical imaging centers. Also, according to AMIC, the methodology used by MedPAC to make its utilization assumptions did not account for the health or age of the patient – both important factors accounting for patient preparation time – the single biggest determinant affecting the length of an imaging appointment, and ultimately utilization rates. Denying providers adequate payments for the services they provide may account for some short-term savings to Medicare, but it ultimately could result in access problems for Medicare beneficiaries, especially in rural areas.

There is no argument that there is waste in our current healthcare system. We need to change the way we deliver and pay for healthcare in this country. But cutting payments for valuable services is not the way to fund health reform. We must focus on innovation that increases value by improving care for patients and helps realize substantial savings by enabling healthcare professionals to deliver more efficient, coordinated care. By focusing on patients and care providers, we can work together to advance healthcare and drive for goals like better diagnosis, more appropriate treatment, faster patient recovery and more effective management of long-term health—all of which can help drive down the cost of providing care. Right now we are trying to chip away at an antiquated payment system by cutting payments and containing services, instead of really focusing on how to change that system to better reflect the way healthcare can be delivered today. We have a great opportunity right now to really improve our healthcare system – let’s slow down a bit to make sure we do it right.

Disruptive Women is pleased to introduce you to our May Man of the Month—Charlie Inlander. You can read all about Charlie’s remarkable career and learn from his astute insights and observations as Glenna Crooks sits down and talks to Charlie. Enjoy the conversation. Let us know if you agree with Charlie’s answers.

I’d like everyone to meet Charles “Charlie” Inlander. Charlie is currently an international health marketing, media and communications consultant and was formerly the President of the nonprofit People’s Medical Society.

He is a faculty lecturer at Yale University School of Medicine, an adjunct faculty member at the Chicago-Kent College of Law, a Fellow of the Institute for Science, Law and Technology at the Illinois Institute of Technology and on Public Radio International’s MARKETPLACE and has appeared on programs including Oprah, Donahue, Today, Good Morning America, Dateline NBC, 48 Hours, 20/20, Geraldo, NBC Evening News, CBS Evening News, ABC Evening News, and The News Hour with Jim Lehrer.

He is a founder of the Civil Justice Foundation and serves, or has served, on the boards of Consumers for Civil Justice, the National League for Nursing and the Pennsylvania League for Nursing, and advisory boards of the Citizen Advocacy Center, the Primary Care Management Association, the American Academy of Family Physicians, HealthMarket and Bottom Line/Personal publications. He was a columnist in Nursing Economics and a contributing editor for Medical Self-Care magazine. He has authored over a hundred books for health care consumers and articles regularly appear in such publications as The New York Times, Glamour, and Boardroom.

Charlie and I share Midwestern, Chicago-area roots, but that’s not why I like him so much. Yes, he’s smart, but he’s also nice. I mean that. He’s nice. Charlie and I don’t agree on everything but I know when we disagree, that’s he’s coming from “a good place” of true advocacy origins. There is not a mean bone in his body – which, above all, is probably the secret of his effectiveness. Charlie can deliver the toughest messages you might not want to hear, but you’ll like him while he’s doing it. There is something wonderful in his heart that shines through.
I hope you enjoy meeting him in this interview as much I’ve enjoyed knowing him.

Charlie,

It is so great to be able to talk with you for this Disruptive Women forum. We’ve never had a dull conversation and I know you won’t disappoint me this time, either. You were involved in advocacy long before me, I’ve learned much from you and want to talk with you about three issues today: first, your experience as an advocate; second, how today’s advocacy is different; and third, about your views on the current state of play in national health care today.

First, about your experience in advocacy generally.

Q. It’s an ‘interesting time.’ You’re the advocate’s advocate. What’s your advice to advocates for patients today?

A. Put yourself in the patient/consumer’s shoes. I learned at a young age that my experiences and views were not always the same as those I wanted to help. For example, I came from an upper middle class family and grew up in the nicest suburbs of Chicago. As a teenager in the early 1960’s I was involved with the civil rights movement, going into the inner city to work with kids in those neighborhoods. We would help them with school work, volunteer at community building programs, etc. But I saw that most of the time, we were doing the work for them instead of teaching them skills we had. And, of course, we left each day and went back to our suburbs. They still had to cope with their environment. From that, I realized that the most effective advocates are those who empower the people for whom they advocate – teaching them the skills, know-how or information necessary to take on the challenges they face.

Then in 1965, when I came to Washington, DC for college, I became involved with civil rights issues there and the anti-war movement. At the time, I thought my best skills were as an effective organizer and speaker and tried to pass those along. I never felt that just going to a march or protest meeting was enough. I believe that if you are taking on a cause, your job is to help win over as many supporters as possible so that even if you are not there, they can fight the battle on their own.

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