There are two ways to listen and/or participate in what will be fascinating conversations — listen online at http://www.blogtalkradio.com/realwomenonhealth or call toll-free (646) 929-2625.

And speaking of Patient Advocacy and Empowerment, Disruptive Women in Health Care is working on its next e-book which is all about Patient Advocacy.  Start looking for posts later this month.

If you have stories or tips to share on this subject, we invite you to send them in.

Related posts:

1. Listen to Podcasts of Disruptive Women on Real Women on Health!
2. Online Radio Series Showcases Innovative Influencers Transforming Healthcare
3. Disruptive Women on the Radio…with Real Women on Health

Related posts:

1. “News (Hot) Flash: Sex, Drugs and Menopause” Recap – 2010 Breakfast Series

Real Women on Health!, the multi-channel platform and online community for women, reveals the power of patient advocacy with a leading healthcare blog community, Disruptive Women in Health Care. The two online media forces have invited key influencers from the Health 2.0 movement for a three-part call-in, live on-line radio series starting in August.

The Real Women on Health! online radio show will allow experts to share their ideas on how to use technology to promote collaboration between patients, their caregivers and medical professionals. The shows will feature Indu Subaiya, co-founder of Health 2.0, Jane Sarasohn-Kahn, health economist, principal of THINK-Health, Trisha Torrey, Guide to Patent Empowerment, Regina Holliday, medical advocate and muralist and several others. “We’re excited to bring together these women innovators to share their visions of Health 2.0 and what it means for healthcare’s stakeholders – which should be every one of us,” says Robin Strongin, founder of Disruptive Women in Health Care and President and CEO, Amplify Public Affairs.

Innovative companies and entrepreneurs in Health 2.0 are developing the most effective tools and approaches to healthcare in this new century, and are looking for new ideas from all sources. “We know how important collaboration and communications are to transforming healthcare today”, says Kelley Connors, founder of Real Women on Health! and President of KC Healthcare Communications LLC. “Listeners who call in will have the chance ask questions, and share their ideas as well – it’s all about sparking a dialogue on patient advocacy,” she added.

Topics and guests include:

Tuesday, August 3rd 12:00pm – 1:00pm EST: Topic: How ‘Health 2.0’ is Evolving and Why You Should Care.” Featured guests, Indu Subaiya, co-founder of Health 2.0, a leading showcase where healthcare transformers share news and ideas around technology and patient communities, and Jane Sarasohn-Kahn, health economist, principal of THINK-Health and founder of one of the most influential blogs in healthcare, Health Populi.

Thursday, August 5th 12:00pm – 1:00pm EST: Topic: “Patient Empowerment: How to be Your Own Best Advocate.” Featured guests, Trisha Torrey, Guide to Patent Empowerment, About.com and quoted in this month’s “O” Magazine, and Regina Holliday, medical advocate and muralist, painter of “73 cents,” a depiction of challenges she faced to acquire her late husband’s medical records as he struggled with cancer (“73 Cents” also cover of British Medical Journal 9/09).

Later in the month, the show will also explore how healthcare professionals are using social media to enhance communications with patients.

There are two ways to listen and/or participate in what will be fascinating conversations — listen online at www.blogtalkradio.com/realwomenonhealth or call toll-free (646) 929-2625.

For more information on this series or how to sponsor shows, please contact Cassie Holm, cassie@realwomenonhealth.com or call 201-417-1309.

Related posts:

1. One more chance to catch Disruptive Women on Real Women on Health!
2. The New Kid on the Online-Healthcare-Discussion-Community Block
3. Disruptive Women on the Radio…with Real Women on Health

You’re Invited to

“Solutions To Scale: Proven Health Care Models for Primetime”

 Wednesday, June 30, 2010

 9:00 – 11:30 am

Breakfast will be served at 8:30 am

Kaiser Family Foundation

Barbara Jordan Conference Center

1330 G Street, NW

Washington, DC 20004

 Raise the Voice, a program of the American Academy of Nursing supported by a grant from the Robert Wood Johnson Foundation, showcases the work of “Edge Runners” – nurse researchers and experts who have developed proven care models and interventions that demonstrate significantly improved clinical outcomes and cost savings.  The Edge Runners will share their experiences to highlight what does and does not work for consideration by federal and state agencies during health care implementation.

Welcome:

• Diana J. Mason, PhD, RN, FAAN, Editor-in-Chief Emeritus, American Journal of Nursing
• The Honorable Robert Borski

Opening Remarks:

• Ken Thorpe, PhD, Department of Health Policy and Management, Rollins School of Public Health, Emory University

Panel One:

• Tina Johnson, CNM, MS, Practicing Nurse Midwife
• Tine Hansen-Turton, MGA, JD, CEO, National Nursing Centers Consortium, Executive Director, Convenient Care Association, Raise the Voice Edge Runner
• Eileen M. Sullivan-Marx, PhD, CRNP, FAAN, Advisor, Living Independently For Elders (LIFE), Raise the Voice Edge Runner
• Deirdre Baggot, BSN, MBA, Administrator for Cardiac and Vascular Services, Exempla Saint Joseph Hospital, CMS ACE Demonstration Site for Bundling Payments
• Sandra Haldane, BSN, MS, RN, Chief Nurse, Indian Health Service

Panel Two:

• Randall Krakauer, MD, FACP, FACR, Head of Medicare Medical Management, Aetna
• Susan Reinhard, PhD, RN, FAAN, Senior Vice President, AARP Public Policy Institute, Chief Strategist, Center to Champion Nursing In America
• Matt Salo, Director Health and Human Services Committee, National Governors Association

Moderator:

• Scott Hensley, National Public Radio

RSVP: Joy Burwell 202-263-2971 or jburwell@amplifypublicaffairs.net

Sponsored by the American Academy of Nursing’s Raise the Voice Campaign. Raise the Voice is supported by a grant from the Robert Wood Johnson Foundation

Related posts:

1. Nursing Provides Cost-Effective Solutions for Improving Health Outcomes
2. Health Care as a Right
3. To Regulate—Deregulate? It’s Not So Simple

GENETIC ALLIANCE 2nd ANNUAL GENE SCREEN FILM FESTIVAL

THURSDAY, JULY 15, 2010

Three screenings: 6:00 p.m., 7:30 p.m., & 9:00 p.m.

By Sharon Terry. Genetic Alliance will host its second annual Gene Screen mini-film festival in conjunction with its 2010 Annual Conference, Advancing Novel Partnerships.

This innovative event will shed light on the important world of health and genetics. Numerous creative and informative entries were received for this festival and after a competitive selection process the following films were chosen to be screened:

6:00 p.m. Screening: In My Hands: A Story of Marfan Syndrome – A film that focuses on people learning to live with Marfan Syndrome, a little-known and potentially fatal genetic connective tissue disorder. By following several families we see the despair and loneliness of trying to fit in with what is deemed normal, and we are moved by the hope and inspiration in finding a unique beauty within oneself.

7:30 p.m. Screening:  

• The Power of Two – A feature-length, character-driven documentary in production with international implications about the importance of organ donation and transplantation, Cystic Fibrosis awareness and related health causes. This short clip from “The Power Of Two” will engage and inspire people by conveying a fundamental truth: There is a miracle in every breath.
• Mito-Kids: Documenting Life – In a family shadowed by disease, there is a fine line between spoiling your kids and making sure every day is treasured.
• Jewish Genetic Disease – A film about the lives of three separate families that have experience with a Jewish genetic disorder.
• On Beauty – An excerpt from a film in production follows former fashion photographer Rick Guidotti as he skillfully employs his lens to redefine beauty by photographing children who are often relegated to the shadows because of their genetic conditions. His images are celebrations of life.

9:00 p.m. Screening: Darius Goes West: The Roll of His Life – A group of college students take 15-year-old Darius Weems, who has Duchenne muscular dystrophy, out west to try to get his wheelchair customized on “Pimp My Ride.”

Q & A with the filmmakers will follow each of the three screenings. Come for all three, two, or just one. For more information on the Gene Screen visit: http://www.geneticalliance.org/genescreen2010.

 WHEN:  Thursday, July 15, 2010 ~ Three screenings: 6:00 p.m., 7:30 p.m., & 9:00 p.m.     

 WHERE:  E Street Cinema ~ 555 11th Street NW, Washington, DC  (entrance on E St between 10th and 11th St)

 TO RSVP:  Contact Joy Burwell at jburwell@amplifypublicaffairs.net or call 202-263-2971

Related posts:

1. Hot Topics in Genetics and Advocacy
2. Making Strides in Genome Research

www.youtube.com/watch?v=btHOhNbwTvI

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Childhood obesity was the subject of today’s Disruptive Women in Health Care’s Monthly Breakfast Series Childhood Obesity: A Big Fat National Challenge. Childhood obesity has received a great deal of media attention with First Lady Michelle Obama making it one of her platforms. As noted by all of this morning’s speakers her “Let’s Move!” campaign is well laid out and has the potential for success if we all take a role in its implementation.

Gwen Tolbart a Professional Speaker, award winning television broadcaster and moderator of this morning’s event opened with a vibrant description of a disruptive woman in her life who helped shape her views, including ones on childhood obesity.

Don Mathis, President & CEO of the Community Action Partnership discussed the issue on the federal level. He made three important points: obese kids do not do well in school, they have numerous health problems throughout their lives and they cause a national security problem by decreasing the number of individuals physically able to serve in the military. Additionally, he discussed the issue children in low-income areas have accessing healthy food, commonly referred to as food insecurity or more recently, food deserts.

Next, we took the discussion to more of a local level hearing from Diana Long and Aimee Smith, both of whom have been or are involved in the Philadelphia YMCA. The key to solving childhood obesity from their perspective, is small concrete steps. The ultimate goal is to build social values that will create the necessary behavioral changes. One way the Philadelphia Y is doing its part is by giving all seventh graders in Philadelphia a free YMCA membership. By doing this they are trying to catch kids at a point in time when they are impressionable and need the support to make healthy decisions.

Last but most certainly not least, Rainey Friedman discussed the importance of meeting kids where they are, which today is online. She also stressed the importance of making physical activities fun (and subliminally educational). As founder and executive director of the DreamDog Foundation, an organization that targets childhood development through preschool education and literacy, she had great experiences to share on how to accomplish this. One example she offered was when she developed and taught kids a song about the negative consequences of drinking soda. When she went back to meet with those same kids they had mastered the song and a vast majority of them had cut out sodas. Her final message and a good one to close with was: we need less talk and more action to address childhood obesity in the US…LET’S MOVE!

We hope you will join us for the next breakfast meeting, “HEALTH 2.0: User-Generated Health Care,” June 8, 2010 from 7:30 a.m.-9 a.m. in the Rayburn House Office Building. If you are interested in attending, please register here: www.disruptivewomen.net/breakfastseries. Men are welcome, encouraged even, to attend. We doubled the number of men, so come on, you know you want to.

Don Mathis put it this way: would you rather be in a room with boring men pontificating or in a room full of Disruptive Women in Health Care.

Related posts:

1. National Hispanic Medical Association (NHMA) Part of Obama’s Let’s Move initiative to battle childhood obesity
2. Childhood Obesity: The Time for Action is Now
3. So What You’re Saying Is I’m Fat?

Our panel this morning discussed the issues surrounding how the WHI results were interpreted and communicated to women and their health care providers. We recognize that hormones are not appropriate for all women, and look forward to hosting a future panel that highlights alternatives.

The speakers have a variety of backgrounds and experiences (and genders), and we aim to promote diversity of voices.

This was not normal breakfast conversation.

Today was a jolting – and disruptive – talk about what happens to women’s bodies when they age. (Who knew that if you’re menopausal and you don’t take your hormones, your vagina can literally dry up and shrink?)

The second in Disruptive Women’s 2010 breakfast series, today’s talk was titled, “News (Hot) Flash: Sex, Drugs & Menopause.” The breakfast at Johnny’s Half Shell, was sponsored by Medco – and we’re happy to say there were two men in the audience this month – double last time.

The breakfast started with a screening of trailer for the upcoming movie Hot Flash Havoc. (Think: Michael Moore tackles menopause.)

“It’s not available in theaters yet – but it will be,” said Disruptive Women’s Robin Strongin, introducing the film.

I’m genuinely sad that the documentary isn’t being released until October-ish. Normally, I don’t want to watch anything at 7:30 in the morning, but the little bit that was shown was so funny I can’t wait to see the whole thing. (Seriously, put it on your Netflix queue now.)

Introducing the speakers, Strongin briefly summed up a woman’s life cycle. “You start out life in this estrogen gel – like a gefilte fish,” she said. “Then you hit puberty, you’re either fertile or you’re not, then you’re pre-menopausal, then menopausal, then post-menopausal. Then you die.”

The talk today focused on the menopausal portion of the life cycle. Phyllis Greenberger, President and CEO of the Society for Women’s Health Research, started off speaking about the Women’s Health Initiative. “There was a lot of misinterpretation, some of the results reported were incorrect,” she said.

She quickly explained what they did, what was wrong, and what’s true today. The Women’s Health Initiative was a giant study of postmenopausal women, testing whether hormone replacement therapy could help prevent cardiovascular disease, cancer, and osteoporosis. The results were different for different age groups – women starting hormone therapy in their 70s had generally bad outcomes (increased risk of heart attack, breast cancer, stroke, etc.), while women starting in their 50s had generally good outcomes. But the results widely reported were the negative ones from older participants – so many women never heard about the rest of the research, or anything we’ve learned since!

The next speaker was Dr. James Simon, a clinical professor of obstetrics and gynecology at the George Washington School of Medicine – and a menopause researcher. (But he will forever be remembered to me as the man who scared the crap out of me about the future health and wellness of my vagina. I may not sleep tonight.)

The Women’s Health Initiative’s results scared a lot of menopausal women into quitting their hormones cold turkey. That, is a very bad idea, he said. Going off hormones makes women unhappy and unpleasant, but more disturbing, he said, “when women go off their hormones their vaginas dry up and get smaller.”

(!)

Which makes sex painful – so women stop having it. And, he says, marriages today have enough problems without eliminating sex (or arguing about it).

“No one wants to have sex when it hurts…. You can’t have good sex with a dried-up vagina. That’s a fact,” he said. “I can give you a two-hour lecture on why the parts don’t work.”

Uhm, great. Go on.

Instead, he told a horrifying story about one of his 55-year-old patients – a prominent writer for the Washington Post, who came to his office for her annual healthy woman exam. He asked her how she was feeling, how were things with her husband, how’s their sex life? Good, good, good, she said. Everything was fine.

Then she put her feet in the stirrups.

“I couldn’t even put the speculum in because it’s too shrunk and dry and small,” he said. “I could barely fit a pencil.”

(I have heard stories about women “drying up” and that if you don’t use it you lose it – but I thought that was just, well, talk. I didn’t think it was true.)

He asked her if she was having sex.

She was silent.

Then she started crying. “She cried and cried,” he said.

Painful dried up vaginas aren’t something a lot of women talk about. “It’s grin and bear it, tough it out, or give it up,” he says.

But, being an honorary Disruptive Woman – he laid it on the table.

And Susan Wysocki, president and CEO of the National Association of Nurse Practitioners in Women’s Health pointed out more menopause-related things a lot of young women don’t know – or talk about. Like, who knew some menopausal women off their hormones are in so much pain they can’t ride an exercise bike, or even comfortably sit down.

“Here we are,” she said, “saving at least one vagina at a time.”

She also discussed the fact that some women worry about taking hormones because they don’t want to get breast cancer. She says that sometimes a woman may have a teeny tiny potential tumor that could go un-noticed for years. But, sometimes the hormones can make it grow big enough to show up on a mammogram. And that way a woman can get treatment faster.

“That can be a good thing,” she said.

For more about menopause, hormone replacement, and the WHI study, you can read:

• Women’s Health Initiative site, National Institutes of Health
• “A Fresh Look at Post-Menopausal Hormone Therapy: Benefits and Risks,” Society for Women’s Health Research, January 2010 (updated April 28, 2010)
• “The Estrogen Dilemma,” New York Times Magazine, April 12, 2010
• Hot Flash Havoc movie site

Don’t miss the next Disruptive Women in Healthcare breakfast, “Childhood Obesity: A Big Fat National Challenge.” May 27 at Johnny’s Half Shell. Reserve your spot now!

Related posts:

1. Hot Flash Havoc Premiere
2. Disruptive Women Launches First of its 2010 Breakfast Series: This One on Health Reform Of Course
3. A Taboo Explored: Cancer, Sex, and Intimacy

Watch Nobel laureates, federal decision-makers and world-class medical scientists impart their insights here: http://www.aspenhealthforum.org/video.

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2. Aspen Health Stewardship Project
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Yesterday, I had the opportunity to speak on Capitol Hill as part of a special event hosted by the same group that hosts this wonderful blog – Disruptive Women in Health Care, and its media partner The Hill. The topic was Health eGaming, Healthy Patients: Supporting Stimulus Goals Through Health eGaming. I was there to speak about the opportunities health eGames can bring to healthcare, both as forms of preventative care (e.g., exer-games that get people up and moving and games that promote healthy behaviors, like healthy eating and smoking cessation), as well as games that can help with acute and chronic disease management (e.g., asthma, cancer and diabetes).

The Honorable Nancy L. Johnson, Former Chair of the House Ways and Means Health Subcommittee opened the session, stressing that change was needed in health care and one of the main changes was the need to focus on the patient. “The real reason the patient is going to become the most important person in the healthcare system,” according to Johnson, is “you can’t do prevention without them.”

This point really resonated with me because it made me think about personal responsibility. When it comes right down to it, our health and the reform of our health behaviors rests in our own hands. We have the tools, the information, and now hundreds of health eGames that can help us live healthier and longer lives. Do we need to wait for the U.S. government to prescribe these games (which I understand will take years of slogging through regulatory barriers and miles of bureaucratic paperwork), or can we all just go out and start taking advantage of the great stuff already out there?

iConecto has done the leg work to capture a database of the nearly 600 health eGames and 500 plus mobile applications, many of which are featured and reviewed on our consumer portal Gaming4Health.com. So, if you want to be more active, why not try out some of the many titles designed for the Wii? We had Congressional Staffers at yesterday’s event that were breaking into a real sweat after just a few minutes jogging to a game on Active Life’s Outdoor Challenge. Exer-games like Outdoor Challenge, Wii Fit, and Dance, Dance Revolution are a much better way to spend an evening with your family instead of passively watching Dancing With the Stars on TV. But, if Dancing with the Stars is something you love, then why not do it yourself with the Wii version? And if it is your brain you want to exercise, there are many web sites filled with fun and interactive games that will give your gray matter a work out. Some of the popular brain fitness sites include Happy Neuron, Sharp Brains, and Lumosity.

Being healthy and having an active lifestyle isn’t as hard as it used to be. Today there are mobile and iPhone apps that will provide you with your own virtual fitness coach, or you can try yoga or track your steps, or if you are competitive, you can find online health and fitness competitions.

We all have the resources to be healthier, we just need to step up to the plate and take responsibility for leading healthier lives – and there is no reason why we can’t have a lot of fun while we shed a few pounds, eat better, and work our noggins. So, what are you waiting for? Get out and play a little. It will be fun and good for you!

View photos from this event on Facebook, or on Flickr, and see The Hill’s video coverage here, and The Washington Post’s coverage here.