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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On December 6th, the Disruptive Women in Health Care® blog launched a new initiative, Health in Place™ (HIP), aimed at reframing how and where people of all ages, and across the wellness span, maintain their health, broadly defined. With an advisory board comprised of experts from within and outside health care, HIP hopes to develop an incubator for innovation to address health challenges in unconventional ways and capitalize on the potential for technology to reshape how and where we receive, and maintain health.

“If we are going to prevent the projected escalation in chronic illness, which threatens to overwhelm our health care system, we need to develop new and better ways to elevate the health of our fellow citizens. The good news is that the next frontier in consumer health and well-being is right on our doorstep – literally,” said Robin Strongin, Creator of the Disruptive Women in Health Care blog and HIP. “We crafted this new initiative to advance the next wave in consumer health and well-being, bringing the best of health care to the places where we spend virtually every hour of every day.” (more…)

By Regina Holliday. I don’t know about you, but I love those promotional items I pick up at conferences.  I think it is really cool that my five-year old has a Health 2.0 water bottle and that my 13 year-old has a Cerner backpack.  I carry my Disposable Film Festival messenger back on every trip and I wear my Practice Fusion t-shirt all over DC.

By Alexandra Drane. For four years running now, many of us bloggers have participated in what we’ve called a “blog rally” to promote Engage With Grace – a movement aimed at making sure all of us understand, communicate, and have honored our end-of-life wishes.

The rally is timed to coincide with a weekend when most of us are with the very people with whom we should be having these unbelievably important conversations – our closest friends and family.

At the heart of Engage With Grace are five questions designed to get the conversation about end-of-life started. We’ve included them at the end of this post.  They’re not easy questions, but they are important – and believe it or not, most people find they actually enjoy discussing their answers with loved ones.  The key is having the conversation before it’s too late.

This past year has done so much to support our mission to get more and more people talking about their end-of-life wishes. We’ve heard stories with happy endings … and stories with endings that could’ve (and should’ve) been better. We’ve stared down political opposition.  We’ve supported each other’s efforts.  And we’ve helped make this a topic of national importance.

So in the spirit of the upcoming Thanksgiving weekend, we’d like to highlight some things for which we’re grateful.  

Thank you to Atul Gawande for writing such a fiercely intelligent and compelling piece on “letting go” – it is a work of art, and a must read.  (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…)

By Janice Lynch Schuster. Face to face with his own mortality, Steve Jobs did what millions of sick people do every day: He went to work. He spent time with his family. He daydreamed. He told his story. On last night’s 60 Minutes, Walter Isaacson talked about what he described as Jobs’ denial that he was sick and dying, and his magical thinking that with a good diet and better thoughts, he might heal. But I’m inclined to think it had less to do with magical thinking and more to do with human thinking: None of us wants to be labeled as dying—and why should we? In the context of how Americans think about death—and how they act in the face of it—Jobs’ response is all-too-human.

For many years now, I’ve written on this subject with Dr. Joanne Lynn, a geriatrician and hospice physician. In our book, Handbook for Mortals: Guidance for People Facing Serious Illness, we talk about the living with/dying of conundrum. Americans like to talk about “the dying” as if they were a different sort of person, in contrast to the rest of us, whom Joanne characterizes as the “temporarily immortal.” Once someone has been labeled as dying, we expect him or her to go about the business of doing just that: taking to bed, saying farewells, making peace with God, signing up for hospice, giving up daily routines and purpose. We think of the dying as a distinct group, with different interests, and an entirely different role to play in this life.

The fact is, for Boomers like Jobs, we will spend many years dying of something. Nearly 80 million of us are aging together, and along the way, we will accumulate illnesses of old age: heart disease, cancer, and Alzheimer’s. Thanks to modern medicine and public health, we will live for a long time with what have become chronic conditions. Where these diseases once killed swiftly and uniformly, they are now chronic conditions with which we live—and from which we die. (more…)

The following ran on Forbes on October 19th.  I found this to be interesting and relevant to Health in Place (HIP) which we will launch on December 6th. For more information on HIP click here.

Recently, I interviewed Kerry Kennedy, President of the Robert F. Kennedy Center for Justice and Human Rights, about the recent launch of Health eVillages. This initiative aims to bring mobile medical reference and decision support technology to clinicians fighting to save lives in underserved regions worldwide.

Kennedy is the author of The New York Times best seller “Being Catholic Now: Prominent Americans talk about Change in the Church and the Quest for Meaning,” published by Crown Books/Random House in September 2008, and “Speak Truth to Power: Human Rights Defenders Who Are Changing Our World,” (Random House, 2000). Ms. Kennedy started working in the field of human rights in 1981, when she investigated abuses committed by U.S. immigration officials against refugees from El Salvador. Since then, her life has been devoted to the pursuit of justice, to the promotion and protection of basic rights, and to the preservation of the rule of law. She established the Robert F. Kennedy Center for Human Rights in 1988. She has led over 50 human rights delegations around the globe.

Rahim Kanani: What is Health eVillages?

Kerry Kennedy: Health eVillages is an amazing new coalition of healthcare and human rights advocacy groups that’s dedicated to bringing adequate healthcare to poor, remote and underserved areas around the globe through the latest mobile device technology.

Through contributions, we secure new and refurbished mobile phone and handheld devices, load them with the latest in clinical decision support technology, and get these devices to healthcare professionals who are on the ground providing public health services where it’s most desperately needed. These devices allow them to quickly access the latest information on every disease in common medical texts, for example, to assist in diagnosing and treating patients in even in the most remote regions.

The Health eVillages consortium is made up of leading international healthcare advocacy organizations, mobile healthcare solutions providers, health information technology companies, communications providers, and public health foundations. The RFK Center is part of this contsortium because our organization has been working for four decades on the cutting-edge of social change with human rights activists around the world, and the Health eVillages initiative brings the latest technology to our efforts to ensure that the neediest people around the globe have access to adequate healthcare, a fundamental human right. (more…)

By Mary Grealy. When we talk about people who don’t have access to healthcare, there’s a natural assumption that it’s because they can’t afford it.  A new study shows that’s not necessarily the case.

According to the study published in the journal Health Services Research, 21 percent of American adults said they had delayed care for non-financial reasons compared to 19 percent that cited cost as the primary reason for not seeking healthcare.

Those non-financial reasons included not being able to get to a doctor’s office during working hours, long commutes to the medical office, or not being able to get an appointment soon enough.  As the study’s lead author said, “In reality, there are all kinds of reasons why people can’t get the care they need when they need it.”

There are at least a couple of important points to take from this report.  One is that healthcare providers have to continue exploring creative ways, from telemedicine to non-traditional office hours, to meet the needs of today’s patient population. (more…)

Eleanor Clift

Veteran reporter Eleanor Clift wrote the essay Hospice And The ‘End Game’ after her husband’s death from cancer. In it she concludes that hospice “should be front and center in the debate over the kind of health care future that we want.” Disruptive Women plans to cover the topic of hospice, end of life and caregiving next year, so stay tuned.

Read the essay here.  To listen to a podcast of the essay click here.

The essay appears in Health Affairs‘ August 2011 issue.

By Jane Sarasohn-Kahn. Patients who perceive their visit to the doctor was patient-centered, with more communication, receive fewer diagnostic tests and referrals, and yield lower expenses for diagnostic testing. A new study finds that patient-centered care leads to lower spending on health care over one year of care due to fewer specialty care referrals. A contributing factor to lower costs is increased patient participation during the visit, which reduces patients’ anxiety and perceived need for further investigations and referrals. In the milieu of more effective patient-physician communication, physician gets more knowledge about the patient. This brings greater trust between patient and doctor, as described in Patient-Centered Care is Associated with Decreased Health Care Utilization, published in the Journal of the American Board of Family Medicine published in July 2011, and penned by Dr. Klea Bertaks and Dr. Rahman Azari.

This is not a new concept: ten years ago, the IOM’s seminal report, Crossing the Quality Chasm: A New Health System for the 21st Century, called for “patient-centeredness.”

What is patient-centered care? Bertakis and Azari call out four communication behaviors:

1. Eliciting understanding and validating the patients’ perspective
2. Understanding the patient within his or her psychosocial context
3. Reaching a shared understanding with the patient of the problem and its treatment
4. Creating a partnership in which “activated” patients share in decision making, power and responsibility.

These four precepts were codified in a 2007 publication from the National Cancer Institute, Patient-centered communication in cancer care: promoting healing and reducing suffering.

Health Populi’s Hot Points: Adopting a patient-centered approach isn’t solely about reducing health care costs: it’s about patient empowerment, effective communication between doctor and patient, and participatory medicine. The secret in this sauce is in the communication between the partners: greater sharing of information from each side of the conversation, building greater trust, and leading to a decreased use of unnecessary diagnostic testing, hospital care, and specialty referrals. While long-term outcomes haven’t yet been quantified in the patient-centric approach, this study adds to the growing evidence base that participatory medicine is a win for the patient, a win for the physician, and a win for the larger health system and health economics.

Originally posted on Health Populi on July 19th.

By Glenna Crooks. On June 20, New York Times writer Tara Parker-Pope wrote about how FICO, the company with the scores that describe our credit worthiness, has developed a new FICO Medication Adherence Scores to determine – using public, but not medical, information – who is likely to skip or incorrectly use medications.

Over the next year, 10 million people will likely be scored (without their knowing it, by the way) within a rage of 0-500. Those over 400 would be deemed ‘likely’ to use medication appropriately; those with lower scores would receive calls, cards, letters or some other intervention to boost their rates of adherence.

Halfway into the article, my HIPAA-involved policy-wonk self went bonkers. True, they don’t use medical records information but the fact that without consumers knowing it FICO can amass and organize other public information such as home and automobile ownership, job status, marital status, age and gender, then show payers how the weights of those factors vary by diagnosis enlightened me about the power of data mash-ups. Truth be told, it worried me as well. Who knew?

Wondering if the premise was even valid and also about a surprising finding from FICO’s work that women adhere to medication regimens less often than men, I called my guru on ‘all things adherence,’ Diana Long, to inquire.

She said FICO might, in fact, be ‘on to something’ saying that we in health care have been myopic about patients’ behavior. We think it’s ‘all about us’ and don’t consider that not taking meds or following doctors’ advice might be a reflection of factors other than how sick we felt, what side-effects we feared or what costs we bore. She pointed out, for example, that just because a child knows how to use an inhaler does not mean they have mastered the strategic thinking/planning required to remember that tonight is the night for soccer practice, they should ‘plan ahead’ and take the inhaler to school that morning. The factors we develop as we grow up  – including skill and motivation – to get up for a job every day may be the same factors that determine whether we’ll take our meds, eat right or exercise. (more…)

Early last Friday morning Dr. Jack Kevorkian died at the age of 83. He was a Michigan pathologist who put assisted suicide in the forefront of medical ethics world. Kevorkian was often referred to as ”Dr. Death” as he was a staunch supporter of physician-assisted suicide and “right-to-die” legislation. He was charged with murder numerous times in the 1990s for helping terminally ill patients take their own lives and was convicted of murder in 1999 stemming for the death of a patient who suffered from Lou Gehrig’s disease. He was paroled four years ago in 2007.

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The following ran on May 26th as a part of CNN Health’s coverage on the empowered patient. It is written by Elizabeth Cohen.

By Elizabeth Cohen. As much as she would like to, Dr. Lissa Rankin, a gynecologist, will never forget the woman who planned her wedding while lying naked on her examining table.

“Every 15 seconds, her cell phone was going off, and she was answering it!” Rankin recalls. “It was like, ‘That’s not the cake I ordered,’ and, ‘No, it’s the other gown,’ and I said to her, ‘Is this a bad time? Should I come back later?’ ”

The bride may have been doing great things for her wedding, but she was sabotaging her own care — and it was a really important visit, as she was newly pregnant.

Talking on your cell phone in the examining room, forgetting what medicines you take and lying to your doctor about your personal health habits are all ways of compromising your health.

“The doctor-patient relationship is like a business partnership,” Rankin says. “We need to work together. Trust me to guide you but be willing to do your part.”

From interviews with a gynecologist, a cardiologist, a rehabilitative medicine specialist, a fertility doctor and an internist, here are the Top 10 things patients do to mess up their own care.

1. You talk on your cell phone.

This is your health we’re talking about. Other calls can wait. Turn the thing off.

2. You lie.

“I need to treat you the best way I can, so if you’re gay, tell me. If you drink a bottle of tequila every night, I need to know. If you’re having an affair and not using condoms, let me know,” says Rankin, who blogs at “Owning Pink.” “I promise I won’t judge you.”

3. You do a sloppy job describing your pain.

Is it stabbing or burning? Sudden or constant? Tingling or hot? The answers will help your doctor make the right diagnosis.

“You should describe the exact location, how intense the pain was, what provoked it and how long it lasted,” says Dr. Nieca Goldberg, director of the New York University Women’s Heart Program.

The week before your appointment, keep a diary of your pain and your other symptoms, too, advises Dr. Loren Fishman, a clinical professor of rehabilitative medicine at Columbia University College of Physicians and Surgeons. He suggests using this time to also think about the questions you want to ask your doctor and what you hope to get out of your appointment. (more…)