By Robin Strongin. Over the next several weeks Disruptive Women will be blogging about the various aspects of patient advocacy.  Then in September, we will disseminate an e-Book on the topic.  To get ready for this series, I invite your input; think about what patient advocacy means to you and share your stories with us. Please comment on this post to let us know what you think about the topic– its level of importance in health care and any questions you may have or experiences you are comfortable sharing.I hope you will join us in this very important dialogue.

By Robin Strongin. Please join me in welcoming a stellar group of women to our roster:

	Jane Sarasohn-Kahn, a health economist and management consultant who has worked with health care stakeholders in the U.S. and Europe for over two decades.
	Marcia Nusgart, a pharmacist with a deep expertise in reimbursement and coding.
	Michelle King Robson, a nationally-recognized women’s health advocate and founder, chairperson and CEO of EmpowHER, a health media company for women.
	Regina Holliday, a DC-based patient rights arts advocate, whose work became part of the recent health reform debate.
	Sally White, the executive director of Iona Senior Services in Washington DC
	Trisha Torrey, known as Every Patient’s Advocate, is a newspaper columnist, radio talk show host, About.com’s expert in patient empowerment, and a national speaker who teaches patients how to navigate the unwieldy and dysfunctional health care system.

Please read through their bios and prepare to be amazed.

By Robin Strongin. It didn’t receive much attention in the context of oil wells being capped and financial services legislation being passed, but the Federal Communications Commission (FCC) took a step last week that could make a profound difference for Americans who live in rural parts of the country.

The FCC voted unanimously to have the federal government pay a greater share of broadband Internet costs for rural health care providers, and the commission also expressed its intent to subsidize the construction of broadband networks.

Why is this important?  Over the past 25 years, according to the Center for Health Transformation, over 500 rural hospitals have shuttered their facilities.  And, while 25 percent of the U.S. population lives in rural areas, only about one in ten doctors base their practices in sparsely populated areas, creating a serious physician shortage.  For many, it’s an economic hardship to drive a few hundred miles to see a specialist.  Broadband access can bridge those distances and help physicians and rural patients share vital information.

The FCC has a $400 million annual spending cap for rural health care telecommunications programs, but it wasn’t spending all of that money.  So, now it will pay 50 percent of monthly broadband charges for eligible health providers, instead of 25 percent.

It’s not a lot of dollars in the grand scheme of federal outlays, but if it can help bring quality health care closer to those living in America’s wide open spaces, it’s one of our nation’s better investments.

By Robin Strongin. When the Obama Administration announced the new regulations expanding preventive care, ensuring that essential screenings and tests would be covered without co-pays for deductibles, my first thought was that this may be one of the most important provisions of health reform in terms of improving the overall health and well-being of the American people.

My second thought concerned forests, falling trees and sounds we may or may not hear.

The history of health care in the United States is, in large part, defined by sound policies and vital programs that are not accompanied by effective outreach to  the patients and consumers who have the most to gain from these innovations.  Thus, new provisions expanding preventive coverage have the potential to be like the proverbial tree falling in an empty forest.  If we don’t do a good job letting people know these services are more accessible, will they take advantage of them?

I think of the millions of people who are eligible for Medicaid or for Children’s Health Insurance Programs who aren’t enrolled.

I think of the widespread confusion that existed in the early days of the Medicare Part D prescription drug program until several organizations stepped in to conduct coast-to-coast information sessions with seniors.

And I think of the story that just appeared in the New York Times (http://www.nytimes.com/2010/07/15/health/15chen.html?_r=2&ref=health&pagewanted=print) regarding the growth in usage of the “medical home” model for health care.  (I prefer the term health home, but that’s for another post.) As Dr. Pauine Chen pointed out in the Times, empirical evidence is showing that the medical/health home – shorthand for greater care coordination between the patient’s primary care physician, specialists and other health care professionals – is working.  A demonstration project sponsored by the American Academy of Family Physicians showed that the new model was improving quality of care, efficiency of operations and physicians’ job satisfaction.

But patients hated it, because no one bothered explaining to them why their one-on-one relationship with their health provider was being replaced by a one-in-three or one-in-four relationship with multiple providers, even if it resulted in better care.

And, thus, does this new innovation in health care delivery fall within the proud history of U.S. health care in which great ideas are not linked with communication to the patient.

As health reform is implemented, both the public and private sectors need to do better, beginning with outreach to let people know about the new preventive care coverage and, more importantly, to ensure that Medicaid expansion and the new subsidies to help make private health insurance more affordable affect the people for whom they are intended.

By Robin Strongin. Republicans on Capitol Hill are still steaming over President Obama’s decision to install Dr. Donald Berwick as administrator of the Centers for Medicare and Medicaid Services via a recess appointment (http://www.politico.com/news/stories/0710/39759.html), bypassing the normal confirmation process which would have included a hearing before the Senate Finance Committee.

Now, GOP members of the Finance Committee are insisting, in a letter to committee chairman Max Baucus (D-MT), that a hearing should take place anyway.  In their letter, they argue that the lack of such a forum “casts a shadow over (Berwick’s) legitimacy and authority to serve as administrator during a critical time for CMS.”

That rhetoric may be overhyped.  After all, Berwick is hardly the first nominee, Democratic or Republican, to take office by virtue of a recess appointment.

Nonetheless, there is a legitimate point here that a hearing needs to take place.  But, while Senate Republicans want to grill Berwick on his now-infamous speech that some interpret as extolling the virtues of Britain’s National Health Service, I believe there is a far more compelling reason for him to face congressional inquisitors.

By 2014, approximately 30 million now-uninsured Americans are going to be joining the ranks of those with health coverage and, in so doing, significantly increasing the utilization of health services.  As many analysts have pointed out, if this utilization escalation happens within our current health care system, it’s reasonable to expect health costs to shoot skyward without a commensurate increase in quality and cost-effectiveness. (more…)

By Robin Strongin.  This evening I will be moderating a panel of three Washington Post reporters: Ceci Connolly, Amy Goldstein and David Brown.  They will be discussing LANDMARK, the book they, and other Washington Post reporters wrote about the new health care law, the Patient Protection and Affordable Care Act.

The first book on the Obama Administration’s ground-breaking piece of legislation, the Washington Post’s guide to health-care reform traces the rocky path Obama and the Democrats traveled to achieve this historic overhaul, explains the legislation itself, and shows how it will impact America.

We will be summarizing the presentations and posting about it tomorrow.  In the meantime, if you have any questions you would like me to ask one of the reporters, send them my way.

LANDMARK’s riveting behind-the-scenes narrative, reported by Ceci Connolly, reveals just how close President Obama’s signature initiative came to defeat, as well as the compromises and deals that Obama and his Democratic majority in Congress made in achieving what has eluded predecessors for 75 years: a law that expands and transforms America’s health-care system. In the second section, a Washington Post reporting team led by Alec MacGillis answers some of the most pressing questions about the health-care law’s immediate and long-term impact. The book also includes an accessible summary of the legislation itself, produced by the Congressional Research Service of the Library of Congress.

By Robin Strongin. I spent part of this past weekend at the Ovarian Cancer National Alliance (disclosure-a client of mine) Annual Conference and came back both humbled and inspired.  It is a remarkable experience to talk with people whose lives have been profoundly changed by cancer.  Their grace and strength, their determination to DO something — about research, about curing this disease, about changing laws, about helping others – was inspiring.  The women I met were young and not so young, they had hair, and bald, tatooed heads, they came from all over the country and they were all, in their own way, supporting each other and themselves. Many of them had become advocates.

Over the years, I have noticed an exponential increase in the number of professional health advocates and individual patient advocates.  Many advocates, not surprisingly, have been personally affected by illness–and the unbearable frustration that comes with having to not only focus on healing, but navigating multiple dysfunctional health care systems along the way–whether it’s poor quality care, misinformation, lack of information, difficulties finding health care professionals who meet individual needs, to name a few.  

Advocates are certainly not new, but what has changed are the availability of new online and mobile tools to connect advocates, their families, their friends, and others with similar situations.  The ability to organize, advocate, tell your story, through various mediums has fueled a new phase of patient advocacy– and given voice to what I see as a revolution.

Disruptive Women in Health Care is working on its newest e-book which will feature posts by a wide range of patient advocates–these stories and shared experiences will not only move you but will provide useful information so you too can advocate.  

Look for these posts throughout the summer, and send us your stories as well.

By Robin Strongin. No such thing as a summer vacation for those Inside the Beltway tasked with implementing and explaining health reform.

In case you were looking for some summer-time reading, the new insurance portal, http://www.healthcare.gov/ just launched (a few hours ahead of its July 1 deadline).  You can work your way through 500 pages of content and state-by-state listings of more than 5,500 open health insurance products.

And if that’s not enough to quench your health reform thirst, The new National Prevention, Health Promotion and Public Health Council, created by the Affordable Care Act, submitted its first status report to Congress on July 1.

Chaired by Surgeon General Regina Benjamin and composed of senior government officials across federal departments and agencies, the Council is charged with elevating and coordinating prevention activities and designing a focused strategy across federal departments to prevent disease and promote the nation’s health. The report submitted is the Council’s first, and an early step in the Administration’s development of a first-ever National Prevention and Health Promotion strategy. The Strategy’s impact will be significant because it will take a community health approach to prevention and well-being—identifying and prioritizing actions across government and between the public and private sectors. Both the forthcoming Strategy and the ongoing work of the new Council present a historic opportunity to bring prevention and wellness to the forefront of the nation’s efforts to improve the health status of all Americans.

Read the Council’s report.

Read the Fact Sheet.

By Robin Strongin. I came across this moving post and felt compelled to share it. Wishing everyone a meaningful Father’s Day—one filled with cherished memories, whether you are remembering someone special or making new memories.

Originally posted by Barry Kluger, June 14, 2010 on EmpowHER.com

“And a Happy Father’s Day to all of our dads flying with us today on Southwest Airlines.” I wondered out loud to my wife on that Father’s Day 2001, on a trip to Las Vegas, if I was still a father, and she assured me I was, that you never stop. But that past April, my daughter Erica’s life was cut too short in a car accident in Arizona. That Father’s Day was my first since her death, and my first thought was to “get out of Dodge,” avoiding the IHOPs and brunches where throngs of dads go. But this day, I thought: “There’s no one to call me on Sunday.”

I imagined I would always be a father, and that I would use every opportunity to parent, maybe not my child but someone else’s, through being the kind of person I am. Dads like us love, nurture and never stop being what we are. We are fathers.

That day in April 2001, I joined a club. It’s very select. They don’t have dues. They don’t have a clubhouse. They don’t have a secret handshake. They don’t have a membership card. But the cost to join is high, and while everyone can afford it, no one wants to be inducted. (more…)

By Robin Strongin. This was a busy week in women’s health—an issue of global importance. On June 7th, Women Deliver 2010, the largest meeting on global maternal health in the last ten years, kicked off in Washington, DC. UN Secretary-General Ban Ki-moon delivered opening remarks and US Secretary of State Hillary Rodham Clinton addressed participants via video. The conference offered an opportunity to take stock of progress that has been made in improving global maternal health while assessing the challenges that remain.

Women Deliver 2010 highlighted achievements in reducing maternal mortality, breakthroughs in reproductive technology, the role of women’s health in development, and remaining obstacles to improving maternal health around the world. The conference’s 3,000 participants, including heads of state, ministers of health and leading maternal health advocates, called on governments, donors, and multi-lateral organizations to increase their financial commitments to women and girls. For more information on Women Deliver, visit: www.womendeliver.org and to watch replays of the presentations, click here: www.womendeliver.org/webcast.

During the conference, Population Action International launched a new documentary, Empty Handed: Responding to the Demand for Contraceptives. WATCH THE TRAILER

Empty Handed Advocacy Short from Population Action International on Vimeo.

Around the world, more than 215 million women lack access to basic contraception. Empty Handed tells the story of women’s lack of access to reproductive health supplies (contraceptives and condoms) in sub-Saharan Africa, and its impact on their lives. The film documents the challenges at each level of the reproductive health supply chain and identifies key areas of improvement.

Empty Handed was shot in Uganda in March 2010 by PAI filmmaker Nathan Golon with support from the Reproductive Health Supplies Coalition.

By Robin Strongin. I am pleased to annouce our newest Disruptive Women bloggers. This amazing group of women have all in an innovative way worked to improve the lives of others. Like all of our Disruptive Women, they are committed to improving the health and well being of everyone – men, women, and children.

Take a moment to look over their bios; you will be inspired.

	Audrey Sheppard spent four years (1996-1999) directing the FDA Office of Women’s Health as a Clinton Administration Presidential appointee. Earlier in her career, Ms. Sheppard was a legislative and press assistant on Capitol Hill and a political and communications consultant.. In the 2008 general election, Sheppard and colleague Susan Wood Ph.D. spearheaded the national affinity group Women’s Health Leaders for Obama-Biden.
	Dana Alexander is the Chief Nursing Officer at GE where her focus is to ensure that GE’s solutions and technologies effectively support nursing priorities and future patient care delivery. She is an active member of the American Organization of Nurse Executives (AONE), Executive Committee Member for TIGER, HIMSS Nursing Committee, Corporate Advisory Board member for Sigma Theta Tau in addition to other healthcare affiliations.
	Indu Subaiya is co-founder of Health 2.0: User Generated Healthcare, a first-of-its-kind forum showcasing leading edge digital media, web and mobile technologies in healthcare.
	Karyne Jones is President and Chief Executive Officer of the National Caucus and Center on Black Aged, Inc. (NCBA) and NCBA Housing Management and Development Corporation. She served for eight years in the Texas Legislature representing District 120 in San Antonio.
	Lisa Martinez is a consultant and educator in women’s health and was the Founder of The Women’s Sexual Health Foundation (TWSHF). She currently serves as a scientific and clinical advisor to The Alexander Foundation, and as a reviewer for the Association of Women’s Health, Obstetric and Neonatal Nurses journal Nursing For Women’s Health.

By Robin Strongin.  Breaking News.  Exciting news for Disruptive Women in Health Care.  Recently, I had the opportunity to meet Kelley Connors and Cassie Holm. Kelley is the creator of Real Women on Health and she and Cassie have created an amazing site. 

Kelley, Cassie and I have a great deal in common, especially our enthusiasm to talk – to share our knowledge and experiences with other women. Kelley is host of Real Women on Health!,  an Internet radio program that has just made the exciting move to TALK RADIO….and they have invited me to  be the show’s DC Health Correspondent, providing “inside the beltway” health policy updates for the Real Women on Health! talk radio show.

Here are the details:  please tune in and join the conversation (call in number is 203-845-3044).  Real Women on Health! will be broadcast at 8:00 pm ET, Wednesdays on News/Talk 1400 WSTC 1350 WNLK (Cox Media Group)  and will also available streaming online starting April 21^st.

 The dynamic one-hour show will be a conversational platform for featured guests and real women to share their collective wisdom and subtle secrets on topics that matter most to them.

By Robin Strongin.  Heads up — the New York Times magazine will be publishing The Estrogen Dilemma this Sunday, April 18th.

Just in time for Disruptive Women’s April 29th breakfast: News (Hot) Flash: Sex, Drugs, and Menopause. (you can register here and of course, MEN are more than welcome to attend.)  We will be showing a sneak peak of the soon-to-be-released movie, Hot Flash Havoc.

Estrogen and Menopause:  Lots of studies, lots of data, lots of unanswered questions.

If you are comfortable, feel free to share your experience with the mother of all hormones.

By Robin Strongin. Allow me to introduce everyone to our newest Disruptive Women bloggers. As you can see, I once again have the privilege of announcing an amazing group of women—all of whom, in their own unique way—work to improve the lives of others. Some through art and music, some through science, some through direct patient care, and others through policy and communications. The one thing these dynamos have in common, as do all our Disruptive Women, is an unrelenting passion to improve the health and well being of everyone – men, women, and children. How they do it is where things get interesting.

Take a moment and look over their bios. You won’t be disappointed.

	Archelle Georgiou, MD conducts a twice weekly Fox TV healthcare segment in the Twin Cities where she offers viewers a practical and balanced analysis of the latest health care news headlines and translates the information into practical tips they can use to take better care of themselves. She is also a Fellow with the University of Minnesota Center for Spirituality & Healing and works collaboratively with the Center to empower consumers to navigate the health care system. All this and more after fourteen years with UnitedHealth Group.
	Candace Littell, currently serves as a Senior Advisor and Counselor to corporate clients, associations and related organizations. She is an executive with nearly 30 years of diverse experience in healthcare financing, reimbursement, policy, strategy and advocacy.
	Concetta Tomaino, PhD, not only plays a mean trumpet, but is also the Executive Director and Co-Founder of the Institute for Music and Neurologic Function and Senior Vice President for Music Therapy at Beth Abraham Family of Health Services in New York.
	Cynthia Flynn, CNM, PhD, the newly appointed General Director of the District of Columbia’s only freestanding birth center, the Family Health and Birth Center, is also the Expert Midwife on www.pregnancy.org, where she hosts a monthly live chat.
	Judy Greenberg, Director of the Kreeger Museum in Washington DC, is responsible for originating innovative programs involving art, architecture, and music such as Hear Art See Music, a program for students with learning disabilities and Conversations at The Kreeger Museum, a program for individuals with Alzheimer’s and their caregivers.
	Sheryl Flynn PT, PhD, is the Founder and CEO of Blue Marble Game Co, a serious games company that focuses design and development of video games to enhance rehabilitation for people with disabilities worldwide.

Learn more about our new bloggers, as well as all the Disruptive Women.