Kelley Connors

This post was written by Kelley Connors, President, Founder, Real Women on Health!

Patient advocacy has a new meaning for me – for years I was only looking at one piece of the advocacy puzzle. Today, I see the whole picture from the patient as well as organizational standpoint.  One’s view certainly intensifies as your passion rises when your own family member or friend needs help navigating the healthcare system to receive the right care.

For years, I’ve been behind the scenes of educational campaigns that patients benefited from with pharmaceutical industry support; think Go Red for heart disease awareness among women, and Susan G Komen’s grassroots efforts to increase public awareness about the importance of self-breast exams and mammograms.  With women’s lifetime risk of breast cancer being one in eight and heart disease the leading cause of death among women, I’ve been hired as a PR specialist to develop advocacy campaigns for companies to help women gain the knowledge they need to effectively prevent and treat a myriad of women’s health conditions.

But, things change when it’s your dad who has chronic myelogenous leukemia (CML).  And, you start to dig in to find out as much as you can about the condition, how to pay for a drug that costs $8,000 a month, and how to coordinate care when oncologists – as valued as they are – may miss concomitant conditions that impact how a patient feels and responds to CML treatment.

(more…)

Last Friday the Food and Drug Adminstration approved ella, a new drug that is supposed to block pregnancy up to five days after sex. This is two days longer than the currently available emergency contraceptive Plan B. Some anti-abortion groups are arguing that this is not a means to prevent pregnancy, but rather end it.

 Loading ...

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.

(more…)

Did you miss Disruptive Women bloggers Indu Subaiya, Jane Sarasohn-Kahn, Trisha Torrey, and Regina Holliday this week on the Real Women on Health! Radio series? Or did you hear them, but want to listen again? If so, you can listen to the podcasts now available.

Tomorrow, Thursday, August 5^th from 12:00pm – 1:00pm EST Disruptive Women Trisha Torrey, Guide to Patent Empowerment, About.com  (http://patients.about.com/) and quoted in this month’s “O” Magazine, and Regina Holliday http://reginaholliday.blogspot.com/) , 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) will be featured guests on the Disruptive Women in Health Care and Real Women on Health Radio! blog talk radio show. The topic for the show is “Patient Empowerment: How to be Your Own Best Advocate.” 

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.

No matter who you are, the Affordable Care Act will help make your health care better. The reforms in the law will help bring costs down and will improve the quality of care for all Americans.

But we know that women in particular suffered under the old health care system and will especially benefit from the important changes in the new law. This was confirmed last week, with the release of a new report from the Commonwealth Fund highlighting how important the new law is for women across the country. The report notes:

Up to 15 million women who now are uninsured could gain subsidized coverage under the law. In addition, 14.5 million insured women will benefit from provisions that improve coverage or reduce premiums. Women who have coverage through the individual insurance market and are charged higher premiums than men, who have been unable to secure cover-age for the cost of pregnancy, or who have a preexisting health condition excluded from their benefits will ultimately find themselves on a level playing field with men, enjoying a full range of comprehensive benefits.

Under the old health care system, a healthy 22-year-old woman could be charged premiums 150 percent higher than a 22-year-old man and many insurance companies treated simply being a woman as a “pre-existing condition.” Many individual market health insurance policies didn’t include maternity care and some states even made it legal for insurers to reject applicants who are survivors of domestic violence.

The new law makes important changes that will help ensure all women get the care they need and deserve. The Affordable Care Act prohibits insurance companies from denying any woman coverage because of a pre-existing condition, excluding coverage of that condition, or charging more because of health status or gender. Being a woman will no longer be a pre-existing condition.

The law will also help ensure women have access to a host of preventive benefits including mammograms and pap smears. If you purchase a new insurance policy after September 23, insurance companies will be prohibited from charging you a deductible, co-payment or co-insurance for these and other preventive services. You can learn more about these new preventive services, and get information about your health care choices at HealthCare.gov.

And beginning in 2014, Americans will have access to a new competitive insurance marketplace. The new marketplace will include health insurance exchanges where millions of Americans and small businesses will be able to purchase affordable coverage, and have the same choices of insurance that Members of Congress will have.

To learn more, read about the benefits of the new law for women.

Orignally posted on http://www.whitehouse.gov/blog/2010/08/02/ensuring-women-get-care-they-need-and-deserve on August 2nd by Tina Tchen who is Director of the White House Office of Public Engagement and Executive Director of the Council on Women and Girls.

With Disruptive Women in Health Care Real Women on Health! Reveals Power of Patient Advocacy

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.

Disruptive Woman Regina Holliday’s testimony at the release of the final rules on meaningful use on Tuesday.

Straight from AHRQ….

This week HHS announced final rules to help improve Americans’ health, increase safety and reduce health care costs through expanded use of electronic health records (EHR).  The announcement marks the completion of multiple steps laying the groundwork for the incentive payments program.  One of the two regulations announced today defines the “meaningful use” objectives that providers must meet to qualify for the bonus payments, and the other regulation identifies the technical capabilities required for certified EHR technology. Select to access the announcement.

Donald M. Berwick, MD, MPP, is President and Chief Executive Officer of the Institute for Healthcare Improvement (IHI). The Institute for Healthcare Improvement (IHI) is a not-for-profit organization leading the improvement of health care throughout the world.

On July 7, 2010, Dr. Berwick was appointed to serve as the Administrator of the Centers for Medicare & Medicaid Services.

 Loading ...

By Joy Burwell

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

Ever since Viagra hit the stores (and bedrooms) drug companies have been searching for a comparable little pink pill. Viagra didn’t seem to do much for girls (we tried it once, we felt nothing). Now there’s a new pink pill that came really close to getting FDA approval, but failed.

 Loading ...

On June 8th, in conjunction with Health 2.0 Goes to Washington, we held a Disruptive Women breakfast on the topic of Health 2.0. For highlights, read our summary and watch the video below.

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.”