By Carrie Winans

The Disruptive Women in Health Care blog continually aims to encourage discussion and debate among readers about emerging issues and topics in the health care world. Historically, one of the ways that we have done that is through our weekly round-ups – that is, posts containing summaries and links to some of the big stories in health care news for the given week, with some original commentary and content sprinkled in as well. The way we see it, there is just too much happening in this burgeoning industry; it’s hard to keep up, especially when you’re busy disrupting and making headlines in the health care world yourselves. We know the weekly round-ups have been on hiatus for a while, but are happy to report that they’re finally making a comeback. Each week, we’ll be gathering some of the biggest health care news you can use from at home and abroad for posting on Wednesdays. Feel free to comment on what’s included and send us some links to articles to be considered for next week!

Has your week been too disruptive for you to keep up with the news?  Disruptive Women are on the case!  Here is this week’s round up of some of the most pressing issues here in America and around the world.

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By Hope Ditto. Hopefully it is no secret to our blog readership that above all, the editorial team here strives to be Disruptive – in more than one sense of the word. As a news outlet in this century’s ever-changing media landscape, the niche we pride ourselves on filling is just that – disruptive, at least in the sense that we will have the conversations no one else is having, raise the questions no one else is asking and explore the angle no one else is pursuing. We don’t shy away from controversy, nor do we balk at intimacy – as long as topics are well-researched, provide substantiated arguments and at least acknowledge there is an opposing viewpoint, there are almost no topics we consider off-limits.

There is, however, one area we don’t touch (in fact, we avoid it at all costs): partisan support for a candidate. While certainly all of our individual bloggers have opinions and perspectives, points of view and inherent biases, we will never run posts that are blatantly promoting one candidate for elected office over another.

I say this as a caveat to this post, the purpose of which is to announce a new series we’ll be running this year on the Disruptive Women in Health Care blog in which we explore the presidential candidates’ positions on health care and health policy, where they stand on particular aspect or aspects, what they envision to be an ideal health care system for this country and what role they envision the federal government playing in it.

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CMS Administrator Marilyn Tavenner addressing Care Innovations Summit attendees. Image courtesy of Kaiser Health News.

“I think we would all agree that these are not ordinary times, that this is not an ordinary conference, nor is it an ordinary time in health care,” commented Centers for Medicare & Medicaid Services (CMS) Administrator Marilyn Tavenner, in her address at the first ever Care Innovations Summit Thursday. In saying so, Tavenner captured not only the essence of the problems facing our nation’s health care system and the reason that over a thousand national thought leaders, senior government officials and industry experts had gathered, but also inspiring attendees with the idea that, by being there, they had the opportunity to be a part of the solution.

Driving the day at the Care Innovations Summit, which was hosted by the Center for Medicare and Medicaid Innovation (CMMI), Health Affairs and the West Wireless Health Institute, was the notion that American innovation could solve any problem, and the thousand-plus attendees were the innovators to solve this one. Emphasizing CMMI’s founding mission of better health, better care and lower costs, speakers across sectors, industries and areas of expertise continued to echo each other’s cries that it was all possible, if people began collaborating and innovating across fields.

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By Hope Ditto

If you chose to partake in what HuffPo referred to yesterday as “ your country’s empty displays of patriotic kitsch” — aka a State of the Union Drinking Game — last night, I certainly hope health care wasn’t one of your buzzwords.

President Obama delivered his 4^th State of the Union (SOTU) address to Congress last night, outlining his goals and his priorities for the nation in the coming year, and – as Sarah Kliff from the Washington Post’s WonkBlog put it  – “For health policy wonks, Tuesday night’s State of the Union speech wasn’t a thriller.”

In fact, in his nearly 70-minute, 7,000 word address, “President Obama mentioned Medicare and Medicaid… once. ‘Health care’ got two shout-outs. The Affordable Care Act? Not even a name-check,” (per Kliff).

To think of it another way, consider how Daily Briefing editor Dan Diamond broke it down — the president spent 44 words on health reform, accounting for 0.6% of the total speech.

As Politico pointed out, “Obama spent so little time on the [health reform] law that he didn’t even acknowledge an audience member the White House had brought to the speech — a cancer survivor who could have been an example of someone with a pre-existing condition who was helped by the law.”

The White House had announced earlier Tuesday that this young man, Adam Rapp, would be sitting in the first lady’s box. Rapp was diagnosed with testicular cancer on his 23^rd birthday, the same day that he would have lost health insurance coverage were it not for the Affordable Care Act (per CBS) – a potentially powerful testament touting the impact of ACA, and yet one that went unmentioned.

All of this is more staggering when you consider what a departure it represents from years past.

Medscape Medical News reports that, “Obama mentioned either “healthcare” or “health insurance” only 3 times, compared to 6 references in 2011 and 10 in 2010.”

The California Healthline blog lays it out a bit differently, explaining that, “Two years ago, the president spoke for several minutes — a total of 570 words — in urging Congress to pass the Affordable Care Act. Last night, Obama devoted just 44 words to his health reforms — never once touting the law’s actual impact, like 2.5 million young Americans gaining coverage through the ACA. In comparison, the president spent more than 130 words on his renewed cause of streamlining the government.”

And for you visual learners and/or infographics enthusiasts like myself out there, Dan Diamond tweeted this graphic a few hours ago, which I think best serves to drive the point home.

Wondering what Obama spent 70 commercial-free minutes talking about, then? According to the Washington Post, the economy mostly. Check out WaPo’s interactive infographic breaking down the speech by time spent/mentions per subject, and how this year’s spread compares to his previous SOTUs, here.

Meanwhile, the GOP rebuttal, delivered by Indiana Gov. Mitch Daniels, was only marginally better to us health wonks – at least for our interest’s sake. While it steered clear of “repeal and replace,” it did echo Rep. Paul Ryan’s pitch for an overhaul of entitlement programs.

“Medicare and Social Security have served us well, and that must continue. But after half and three-quarters of a century respectively, it’s not surprising that they need some repairs,” Daniels said. “We can preserve them unchanged and untouched for those now in or near retirement, but we must fashion a new, affordable safety net so future Americans are protected, too.”

No one would deny that the SOTU, above all, is an act of political theater. But were there even more theatrics occurring last night than usual? Many Beltway insiders have seemed to indicate this, saying that the SOTU was not only a list of goals for the year, but also, as Kliff put it, “an opening campaign gambit.”

If that is the case, it raises some interesting questions about what we can expect to hear in the fall. After all, as The Hill’s Healthwatch blog pointed out, “Although Democrats insist that Obama will be able to campaign on the healthcare law, it was almost entirely absent from a speech that helped establish the themes and frames of his reelection campaign.”

Just because the president seems to be steering the narrative away from health care so far doesn’t mean it won’t be issue in the upcoming presidential election. Odds are that the Republican nominee – whoever it turns out he (or she… hey, you never know!) may be – will want to discuss health reform, as it has certainly been a hot topic on the campaign trail.

How important of an issue do you think health reform will be in the upcoming election? Will a candidate’s position on health reform and the Affordable Care Act impact your decision to support him or her? Tell us your thoughts in the Comments section below!

The following is a guest post by Jessie C. Gruman, PhD who is the president and founder of the non-profit organization Center for Advancing Health. It was originally posted on the Prepared Patient Forum blog on January 11th.

By Jessie Gruman. “Buck up. You are going to feel bad for a year.”

This was my chemotherapy nurse a year ago, returning a call I made to my oncologist. I had left a message asking whether there was something he could do to help me. Should I feel this horrible following three action-packed months that included stomach cancer surgery and aggressive chemotherapy? 

The answer, at least as far as my nurse was concerned, was “Yes.” 

And she was right. It did take a year to regain my energy and feel well again.

The new year set me reflecting about what I’ve learned about being sick over the past 12 months that only the experience itself could teach me:

You know that old Supremes song, “You Can’t Hurry Love”? I learned that you can’t necessarily hurry healing either, even if you work hard at it. A week after that call to my oncologist – still feeling rocky – I joined a local gym’s “$30 for 30 days” New Year’s special to try to revive my cardiovascular fitness. For each of the next 30 days, I trudged down there, got on that Nordic Track machine and forced myself to flail about for 40 laborious minutes. On most days last year, I made myself walk at least a mile and practice yoga. I did my level best to choke down a tiny healthy snack almost every waking hour. Often, doing these simple tasks took all the energy and will I possessed. But I was committed, convinced that if I did them, I would get better faster.

And it still took a year before I felt normal again. How frustrating was that? (more…)

The following is a guest post by Ms. Nasreen Sulaiman a Senior Instructor at Aga Khan University School of Nursing. She  has worked with palliative patients.

By Nasreen Sulaiman. Palliative care is an urgent humanitarian need for people worldwide with cancer and other chronic fatal diseases as it provide comfort and ease suffering. Nearly 80 % of the cancer patients in Pakistan present late in stages 3 & 4 with terminal disease.  In Pakistan, the concept of palliative care is in its infancy stage and need to be strengthened. In Karachi, one of the mega cities of Pakistan, only two hospices each of 20-25beds provides palliative care services where the health care professionals’ main focus is on providing the physical aspects of care. Pain management, a crucial aspect in the palliative care still remains partially addresses due to lack of narcotic supplies and other medications.  Furthermore, I strongly feel that other than providing pain and symptom relief measures, the social, emotional, and spiritual needs of the patient should also be given prime importance in order to provide holistic care to the patients. Nurses need to learn to utilize various non-pharmacologic measures such as therapeutic communication techniques, use of humor, guided imagery, therapeutic touch, relaxation exercises, religious songs and other diversional activities in order to ease the suffering, emotional distress and provide optimal comfort and support to the patients including their caregivers. Moreover, in palliative care settings, caregivers hold a great importance as they are the ones who are providing the total care and most of the time with the patients. Caregiver role strain is an essential area to be looked at. Caregiver support is another area to be looked upon. We need to establish caregiver self-help groups or other avenues to support the caregivers as they go through lot of emotional pain and need immense help and affection which may assist them to perform their roles effectively with the patient suffering from the disease.

By Hope Ditto

For me, November’s Man of the Month needs no introduction (… because he is my father). For the rest of you for whom he is not a genetic relation, here goes…

The Disruptive Women in Health Care team is pleased to introduce our November Man of the Month — Dr. Peter Ditto, Department Chair and Professor of Psychology and Social Behavior at University of California, Irvine and a leading authority on the psychology of advance medical directives and end of life decision making.

Dr. Ditto is best known for the series of studies he conducted examining key psychological assumptions underlying the effective use of advance medical directives, so much so that he was one of the few psychologists invited to participate in the 1993 Squam Lake conference convened to establish a national agenda for research on advance care planning. He is also a member of the Advisory Panel for the American Psychological Association’s Ad Hoc Committee on End-of-Life Issues.

I sat down with Dr. Ditto (who I more commonly refer to as Dad) to learn more about the psychological aspects of end of life decision making, his research on the subject and more.

You often use the Terri Schiavo case  as an example of the decision making challenges families who must make choices about the use of life-sustaining medical treatment for an incapacitated loved one face. In what ways does the Schiavo case encompass your “traditional” case? In what ways does it diverge?

In many ways, the Terri Schiavo case is not at all typical.  She was a young woman who was struck down unexpectedly in her 20’s. Most end-of-life decision making occurs with elderly people, often with a lot of advance warning that a situation is approaching where the person is going to lose decision making capacity. It is actually interesting that the cases that have most captured the public’s attention and most shaped law and policy on end-of-life decision making have involved these quite rare and unusual cases of young people left in persistent vegetative states (Schiavo, Karen Ann Quinlan, Nancy Cruzan). This is likely because these are cases where the issues are displayed most poignantly – a person who has lost the ability to speak for themselves, about whom everyone is uncertain what the incapacitated person would want done if they could speak, and where family members (and public opinion more broadly) have strong and differing opinions about what is the morally appropriate course of action.

But it is important to point out that these are exactly the problems that occur writ small – in less dramatic and less poignant forms – in homes, hospitals and hospices every day in the US. It is typically older people who have become too sick to speak for themselves, have not completed a little will or conveyed their wishes in any way to their loved ones, and this uncertainty can easily lead to family conflict because people have differing beliefs about the person’s likelihood of recovery, and bring different moral views and emotional vulnerabilities to the situation.

You say that, while many think the presence of a living will would have negated what quickly disintegrated into an ugly situation for the Schiavo and Schindler families, it is not always that simple. What steps can people take to avoid (to the extent it is possible) leaving their loved ones in a similar situation?

In many ways, my scientific work on end-of-life decision making can be seen as a psychological critique of living wills. The problem with living wills isn’t the idea – it is a wonderful and noble concept to try to honor people’s wishes near the end of life by having them record those wishes while they are still able – it is the execution. Quite simply, it is just a really difficult situation to find oneself in, and there are no simple band aids that are going to fix it all up. (more…)

By Casey Quinlan. It’s not easy hearing your name and [insert dread diagnosis here]. I know this only too well after having to find the funny in my own journey through cancer. Cancer is, however, most often a diagnosis that you fight to a defined end. What’s it like to find the funny in a chronic condition like multiple sclerosis?

I have a number of friends who are battling MS, one of whom, Amy Gurowitz, shared a link on Facebook the other day to Jim Sweeney’s online empire of improv humor and chronic disease. Jim’s MS journey started with vision problems in 1985, he was officially diagnosed in 1990, and has been dealing with the disease – finding the funny most of the time – ever since.

Jim’s body of work includes decades of live improv, his one-man show “My MS & Me,” which you can hear on the BBC Radio 1 site. His MS has progressed to the point that he’s now in a wheelchair, and his public presence is mostly limited to Twitter, where his profile describes him as a housebound hedonist (hey, it made ME laugh) and YouTube.

How much courage does it take to laugh out loud, in public, at an incurable disease? Jim certainly has courage at the level required.

Other examples of funny-or-die in managing chronic disease include Mark S. King’s fabulously funny My Fabulous Disease blog (Mark is HIV-positive). The aforementioned Amy Gurowitz laughs out loud about her MS in a number of places, including MS Soft Serve and MS-LOL (life of learning OR laugh out loud, you pick).

On the provider side, there are a number of docs who are breaking up the waiting rooms and wards.

Dr. Patricia Raymond is a gastroenterologist whose mission in life is to take the “ick” out of colonoscopies. She bills herself as The Fabulous Butt Meddler. Since she looks like Bette Midler, the joke works on every level.

Dr. Zubin Damania, a/k/a ZDoggMD (“Slightly Funnier Than Placebo”), is a hospital medicine specialist in Palo Alto as well as a veritable buffet of medical humor, some G-rated and some most definitely NSFW. His videos alone guarantee hours of laughter. (more…)

For many of us the holiday season is a time for family and fun, but for millions of Americans who have lost a loved one, it can instead be a season of depression, stress, and remembrance. In that way it also serves as a reminder to take a step back and wonder what it would be like if we were terminally ill and reaching the end of life. At what point would we want to stop treatment, remove a feeding tube or the plug from the ventilator keeping us alive? Would we want pain relief that would force us into a peaceful slumber? Would we prefer to die at home, in hospice, or in a hospital? How would we want people to bid us farewell?

It’s a tough conversation to have with oneself, since most of us don’t want to admit our mortality, let alone with family who cannot imagine a world without us. Yet it’s necessary that our opinions are clear and in writing to ensure our wishes are honored when the time inevitably comes, and the holiday season offers a unique opportunity to have these difficult discussions with family and friends gathering together.

According to a Pew Research Center survey conducted in 2006, only 29 percent of people had a living will; and in 2007, a Harris Interactive study (PDF) put the proportion with advance directives at two in five. With the aging population growing, these statistics need to be improved upon, and that’s where Disruptive Women comes in.

Last year, around this time, we featured a post from Disruptive Woman Alexandra Drane, who launched the Engage with Grace movement to make sure all of us understand, communicate, and have honored our end of life wishes. This year, to remind people to ask their loved ones Alexandra’s five questions (for a reminder on what the questions are, check out this post from Disruptive Women’s archives) and provide people with the resources they need to plan for the future, we’re dedicating a whole month to end of life care issues. We’re planning to feature discussions about where to start when making an advanced care directive, how clinicians are having these types of conversations with their patients, and what end of life care is like around the world. (more…)

The following is a post by Dr. Jessie Gruman from the Center for Advancing Health. This blog post was originally published at Prepared Patient Forum: What It Takes Blog.

“There is a better way – structural reforms that empower patients with greater choices and increase the role of competition in the health-care marketplace.” Rep. Paul Ryan (R-WI)August 3, 2011

The highly charged political debates about reforming American health care have provided tempting opportunities to rename the people who receive health services.  But because the impetus for this change has been prompted by cost and quality concerns of health care payers, researchers and policy experts rather than emanating from us out of our own needs, some odd words have been called into service.  Two phrases commonly used to describe us convey meanings that mischaracterize our experiences and undervalue our needs: “empowered patient” and “health care consumer.”

As one who has done serious time as a patient and who spends serious time listening to talks and reading the literature that use these words to describe us, I ask you to reconsider their use.

“Empowered patient” The fabrication of the verb “to empower” from the noun “power” was used in the civil rights and community development movements to describe a benevolent bestowal of influence on disenfranchised individuals and groups by those who had previously excluded them.  When used in relation to health care, the word perpetuates the idea that we are passive entities, waiting to be gratefully endowed by our clinician or a new policy with the right and ability to act on our own behalf.  Our “empowerment” takes place not as a result of our own will or preference, but rather because we have been given permission to act in a different way by some external agent. (more…)

By Mary Grealy. I wonder how long it will take before people who should know better stop implying, or even saying outright, that payment cuts to Medicare providers don’t affect beneficiaries.

This weekend, I was among those following the cable news shows to see if Congress would finally reach agreement on a debt ceiling package.  It appears now that, even though it may be a “sugar-coated Satan sandwich” to some, a legislative approach has been crafted that will raise the debt ceiling and establish a process for achieving approximately $2.5 trillion in budget cuts over 10 years. 

In this process, a congressional super-committee will be charged with identifying $1.5 trillion in deficit reductions by Thanksgiving.  If they fail to do so, automatic cuts will occur and fall most heavily on the defense budget and Medicare.

As I was watching the news analysis, though, I saw a continued misunderstanding of what it means to cut Medicare provider payments.  One commentator praised the deal for protecting the most vulnerable in society, pointing out that Social Security and Medicaid were exempt from cuts, and Medicare cuts “would only affect providers.’  We’ve seen the same type of analysis several times today in print reports.

This kind of verbage creates the impression that an acceptable way to reduce Medicare spending, in a way that doesn’t do harm to patients, is to ratchet down payments for physicians, hospitals, medical devices, pharmaceuticals and medical supplies. (more…)

On June 9, 2011, sanofi-aventis U.S. announced the “sanofi-aventis U.S. Innovation Challenge: Data, Design, Diabetes” at the National Institute of Health’s Health Data Initiative Forum. The challenge, which launched on July 1, integrates open data with a human-centered view into diabetes, and will award $220,000 in total prize money.

The challenge is designed for fast learning, so that innovators can create the needed service solutions for people living with diabetes. It brings together the richness of open data sets made available on healthdata.gov, the values of human-centered design, and the leading edge methodology of the top innovation accelerators.

Until July 31^st, innovators can submit their concepts on www.datadesigndiabetes.com.  In early August, an independent panel of expert judges (listed below) will review the submissions and five semi-finalists will be awarded $20,000 and professional mentoring to turn the concept into a prototype. In early September, the five teams will present at a demo day.  An open panel and our judges will select two finalists to receive an additional $10,000 to pilot their prototype in a real life diabetes community.  The findings and learnings from this exercise will inform the selection of a final winner who will receive an award of $100,000, along with a one- month stay at the RockHealth incubator in San Francisco to turn their prototype into a full, real solution for people living with diabetes.

Judges include:

• Jeff Hammerbacher – Founder and Chief Scientist, Cloudera
• Manny Hernandez – Founder, TuDiabetes
• Hilary Mason – Chief Scientist, Bit.ly
• Todd Park – CTO, U.S. Department of Health and Human Services
• Sue Siegel – General Partner, MDV-Mohr Davidow Ventures
• Ida Sim – Director, UCSF Center for Clinical and Translational Informatics
• Dennis Urbaniak – VP U.S. Diabetes, sanofi-aventis

Diabetes is a chronic, progressive disease that has reached epidemic proportion, with 100 million people in the U.S. currently living with diabetes.  At this rate, the CDC estimates that by the year 2050 1 in 3 Americans will have diabetes. 

Visit www.datadesigndiabetes.com for more information, including criteria, official rules and deadlines.  For more updates, follow Data Design Diabetes on Twitter and Facebook.

On the Quality Front: New Approaches in Improving Patient Safety

Thursday, July 28, 2011
1:30 – 2:45 pm ET

A key part of improving quality is in reducing medical errors and improving patient safety. Providers and payers are redoubling their efforts to address such problems, ranging from hospital acquired infections and preventable injuries to avoidable complications and adverse drug reactions.

The need is clear. A recent study published in the journal Health Affairs found that, on average, one third of hospital inpatients suffer an adverse event or medical error. That is nearly 10 times greater than shown by previous studies. As for Medicare, about 1 in 7 beneficiaries experience adverse events, costing the government some $4.4 billion each year.

Join Philips on July 28th, when their latest “Reimbursement Simplified” webinar explores some of the new approaches to improve patient safety including:

• A program by a Chicago hospital to remotely monitor ICU patients
• A JCAHO initiative with top health systems to design and disseminate new safety solutions
• A private payer’s perspective on identifying and managing serious adverse events

Speakers:

• Carolyn S. Langer, MD, JD, MPH
  Medical Director, Medical Management and Quality, Harvard Pilgrim Health Care
• Klaus Nether
  Black Belt, Joint Commission Center for Transforming Healthcare
• Becky Rufo, DNSc, RN, CCRN
  Resurrection Health Care eICU® Program Operations Director, Resurrection Health Care
• Laurel Sweeney (moderator)
  Senior Director Global Reimbursement Policy, Philips Healthcare

To Register: Go to www.philips.com/reimbursement or call 202-263-2900. There is no fee to participate.

The following is a post by Dr. Jessie Gruman from the Center for Advancing Health. This blog post was originally published at Prepared Patient Forum: What It Takes Blog. It was also posted on Better Health.

By Jessie Gruman.“The most important thing I learned was that different doctors know different things: I need to ask my internist different questions than I do my oncologist.”

This was not some sweet ingénue recounting the early lessons she learned from a recent encounter with health care.  Nope.  It was a 62-year-old woman whose husband has been struggling with multiple myeloma for the last eight years and who herself has chronic back pain, high blood pressure and high cholesterol and was at the time well into treatment for breast cancer.

Part of me says “Ahem.  Have you been paying attention here?” and another part says “Well of course!  How were you supposed to know this?  Have any of your physicians ever described their scope of expertise or practice to you?”

I can see clinicians rolling their eyes at the very thought of having such a discussion with every patient.  And I can imagine some of us on the receiving end thinking that when raised by a clinician, these topics are disclaimers, an avoidance of accountability and liability.

But all of us – particularly those receive care from more than one doctor – need to have a rudimentary idea of what each clinician we consult knows and does. Why is this clinician referring me to someone else? How will she communicate with that clinician going forward? How and about what does she hope I will communicate with her in the future?

Why does our clinician need to address these questions?

Because in the absence of real guidance we will guess.  Some of us will make informed guesses and be mostly right. Others of us will leave our primary care provider in the dust and seek care for routine health matters from our specialist, whom we see more frequently and who seems to know us better. Some of us, like my friend above, will ask for help from whichever physician is handy and will call back, regardless of the problem.  And some of us will throw up our hands in frustration and head for the local emergency department when we find we can’t breathe and don’t know which of our doctors to consult about those damn allergies.

These ad hoc solutions are a waste of our time and surely contribute to a poor use of clinician and institutional resources. (more…)