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

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…)

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…)

Health consumers prefer supermarket-based pharmacies to chain or mass merchandiser drugstores, according to the J.D. Power and Associates 2011 U.S. National Pharmacy Study.  Mass merchants, however, often beat out both supermarket and chain drugstores when it comes to price.

In the study, J.D. Power segments brick-and-mortar pharmacies from mail-order. Brick-and-mortar pharmacies cover chain drug stores, supermarkets and mass merchandisers/Big Box stores.

What drives top performance for consumers shopping brick-and-mortar pharmacies are the ordering and pick-up process, the store itself, cost, the non-pharmacist staff, and the pharmacist.

In mail-order, quality translates into cost competitiveness, prescription delivery, ordering, and customer service. Consumer satisfaction with the mail-order Rx channel declined between 2010 and 2011, primarily due to ordering and delivery problems. But due to price and challenges in switching back to the brick/mortar option, mail-order customers are largely expectedly to remain in the channel and not switch to a store. One-third of consumers are required by their insurance provider to use mail-order for maintenance and repeat scripts – these customers are even less satisfied with their pharmacy than those who freely choose to go the mail-order route for prescriptions.

J.D. Power, analysts on consumer satisfaction, notes that Amazon has set a high bar for speed and convenience in the online shopping world. Mail-order pharmacy has a ways to go to catch up to those standards.

High customer satisfaction ties to those consumers who have an ability to have a private conversation with the pharmacist or staff in a private area of the pharmacy. Furthermore, added services such as immunizations and wellness services are driving higher consumer satisfaction with those pharmacies who offer them.

The highest rankings by segment were:

Chain drug stores: Good Neighbor Pharmacy, Health Mart, The Medicine Shoppe (all well above competitors in the segment)

Mass merchandisers: Target, Sam’s Club, Costco (with Walmart at the bottom)

Supermarkets: Publix, Wegmans, Winn-Dixie, Jewel-Osco, Vons (all above the segment average)

Mail-order: Kaiser Permanente Pharmacy, Humana RightSourceRx (both well above competitors).

This is the fifth year J.D. Power has conducted the national pharmacy survey. The poll, fielded in May and June 2011, was conducted among 12,300 consumers who filled a new prescription or a refill in early 2011.

Health Populi’s Hot Points: The pharmacy has always been a touchpoint in consumers’ health, but its importance is growing as a primary care site for wellness, prevention, immunization and a growing menu of consumer-driven primary health care services. The supermarket channel, in particular, has begun to marry messages about nutrition and healthy food with chronic health condition messaging. For example, Wegmans (ranked #2 after Publix stores, features a food/health related display adjacent to the pharmacy: this month, my local Wegmans has been promoting quinoa’s nutritional contributions to healthy eating at a “pharmacy teaching table.’ In the winter, the pharmacy promoted the purchase of frozen blueberries to enhance shoppers’ intake of the fruit’s health benefits in the cold season.

This is another example of health being where our Surgeon General says it is – not in isolation in the doctor’s office, but where we live, work, play and pray. Let’s add the word “shop” to that mantra.

On a personal note, I have a comment to make on J.D. Power’s mail-order pharmacy results. In the past six months, we have been forced to switch to the mail-order channel to acquire a repeat prescription for a member of our family. The company, whom I will not name, is one of the poorer performers on the table – and no surprise to me. The company has a cumbersome, un-helpful, poorly designed website which it claims streamlines the process. For the first three months of the fulfillment process, I’ve had to dial into the company’s call center – which has no hours on the weekend, when I, and most working people, usually run household errands. Suffice it to say, after speaking with the doctor-prescriber’s insurance associate, our experience with this mail-order company was not atypical.

Would that this company, whose services I am compelled to use, could demonstrate the efficiency, accessibility, and friendly quality of my favorite shoe purveyor – Zappos. This is a case where I cannot, if you’ll excuse the pun, vote with my feet.

The following is a guest post by WomanCare Global CEO Saundra Pelletier. Besides serving as the founding CEO of WomanCare Global, Saundra is an international marketing expert, published author, keynote speaker and executive coach.

By Saundra Pelletier. In 1965, Griswold v. Connecticut gave a married woman the right to use birth control to prevent or delay pregnancy as she saw fit. This guarantee of a basic human right led to other reforms that allowed millions more American women to decide the direction of their own reproductive lives.  This summer, we are proud to see another key reform go through: starting next year, the Affordable Care Act will allow even more women in the United States to be in charge of their own health by requiring new health plans to provide free birth control without a co-payment. These are hard-fought wins for women’s health and for women’s rights of which we can all be proud, but sadly the ability of a woman to choose when and whether to become pregnant is far from assured in other parts of the world.

Pause for a moment and imagine you’re not American, but from Sub-Saharan Africa – Ethiopia for example. You are 20 years old and have four children – the first of which you had when you were 15 and newly married. You’re worried about becoming pregnant again. You tried to get birth control once, but arrived at the clinic only to find the shelves bare and no way to access any form of birth control.  The thought of another pregnancy, whether by a husband who won’t take no for an answer, or by a stranger who might force his way upon you while making your way to fetch water for the family is overwhelming. You’re not in great health, and another pregnancy would take its toll on your weakened body. The chances are high that you might not survive pregnancy or labor to be able to take care of your family.

Globally, 215 million women would like to be able to prevent or delay pregnancy, but do not have access to the supplies that would allow them to take control of their lives. As American women, we know from our own experience that the ability to make our own fertility decisions has made an immeasurable impact on our own lives. For women in the developing world, access to reproductive health supplies would save lives and improve health, as well as the economic and social well-being of families and communities.

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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…)

By Glenna Crooks. Sorry, this blog is not about sexy new vaccines – you know, ones that will prevent smoking, cure all cancers, stop obesity or eliminate wrinkles. This is about more ‘here and now’ matters. It addresses vaccines, vaccinators and non-vaccinators, contains a proposal for moving forward on immunizations and some folks – including my friends – are not going to like it. But then, they don’t call this a ‘disruptive’ site for nothin’.

It comes from my attendance at a CME course on vaccines held by Philly’s Children’s Hospital last weekend. I was privileged to hear great presentations and meet fantasic folks. Despite my work in vaccines over several decades in both government and industry, some information was ‘new’ for me, crystallizing issues and controversies in vaccines.   

 Here’s the good news:

Pediatric vaccines continue to prevent suffering, save lives and money. CDC studies show 14 million cases of disease prevented, 33,000 deaths, $9.9 Billion in direct medical costs and $43.4 Billion in savings to society. New vaccines have been added to the schedule. Is that cool or what? When I was in government, companies were leaving vaccines in droves. They’re coming back. Good news.

Rates of underinsurance for children’s vaccines have not increased, despite the new numbers of vaccines (and therefore additional cost for fully immunizing a child). Insurance and Vaccines for Children (VFC) funding is covering kids pretty well.

Pediatricians and their nurses remain unsung heroes, not getting nearly enough credit for the complexity they manage in the number of vaccines and the cost of the inventories they carry, despite the reality that they’re not adequately compensated. They could have long ago abdicated this aspect of a child’s good health. They haven’t. That’s very good news.

Kids aren’t traumatized by having many vaccines administered at once. In fact, research has demonstrated that only the first shot creates the ‘cortisol-raising’ indication of a stress reaction, subsequent shots (sometimes 3-4 others) administered at the same time, don’t.

We’re actually putting fewer antigens into kids today than at any time in history, even though we give many more vaccines! Wow, who knew?! In 1900, the smallpox vaccine had 198 antigens. In 1960, with DTP and polio added, that totaled 3,200 antigens. Today, it’s only 166-169 antigens, in part because we’ve eradicated smallpox and in part because vaccines have been improved. 

Kids – even babies – can handle those vaccines immunologically. Humans develop the capacity to respond to foreign antigens at 14 weeks gestation. There are few foreign antigens present in utero, but babies’ immune systems are challenged right from the moment of birth and have enormous immunologic capacity. And, right from the moment of birth babies can be exposed to the diseases that vaccines prevent. They’re at risk and we need to protect them, when they can be immunized they need to be and when they can’t herd immunity is needed to protect them. (more…)

By Lisa Martinez. Whether you are having an outpatient procedure, being admitted to a hospital or having a prescription filled, there are basic patient safety tips you should be aware of and act upon when necessary. Do not assume anything about your care.

If the staff places an identification bracelet on your wrist, take a look at it and verify that all of the information on the bracelet is correct. Although the staff should review the information on the bracelet before the procedure, this may not always happen. I knew of a healthcare professional that was having a minor diagnostic procedure performed, and after the procedure, she noticed that she was wearing the identification bracelet of a male patient.

Use the call light. If the staff instructs you to use the call light before getting out of bed, do it. You should not be concerned that you are bothering them. They want you to call for assistance so that you will not fall.

Speak up if you have questions or if you are unclear about the instructions you have been given. Also if the staff has not provided discharge instructions to you in writing, request that they do so.

If you are given a medication that you do not recognize, ask what it is and what it is for, and inform the nurse that the medication does not look like a medication you normally would take. If they respond with, “the doctor ordered this”, that is not an adequate answer to your questions.

No news is not good news. Don’t breath a sigh of relief because you have not heard from your physician’s office regarding the results of a test. Call the office for the results and you may want to request a paper copy of the results too. In a study published in the June 22, 2009 issue of Archives of Internal Medicine there was found to be more than a seven percent failure rate in communicating abnormal test results.

Use a hospital or surgery center that is accredited. Ask if the facility is accredited either by The Joint Commission or another recognized accrediting body.

Patient safety is all about you.

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.

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By Trisha Torrey. Once upon a time when we experienced strange symptoms, we went to the doctor, the doctor listened and asked questions, we got the medical tests we needed, were correctly diagnosed and successfully treated, and we could afford all that great care.

I say “once upon a time” because today, that scenario is mostly a fantasy.  And sadly, today’s story doesn’t always end with happily-ever-after – for anyone.

Providers went to medical school to learn to heal and help. Instead they carry excessive patient loads amidst decreasing reimbursements, spend a small fortune on malpractice insurance, and reject some patients who don’t have the right kinds of payers, or who take up too much time with difficult diseases or comorbidities. They are frustrated with their inability to deliver the care they prefer to deliver, but they must protect themselves or they will lose their practices.

Since the passage of reform, insurers have been forced to realign their requirements and services so they can continue to suck money from employers, patients, providers and the government. They spend billions on lobbying efforts, and reduce their provider reimbursements – at the expense of patients who are continually denied the care they need. A million families go bankrupt each year because they erroneously believed their insurance would cover their care when they needed it.

Those patients, accustomed to provider paternalism and decent payment coverage, find themselves blindsided to this devolved system that no longer provides the care they need and deserve. They get sicker. They die from medical errors. They lose their homes. No one has ever even suggested, much less taught them how to stick up for themselves or take responsibility for their own medical decision-making.

Patient Advocates to the rescue! Patient advocates are the only participants in the healthcare equation who may deliver improved outcomes for everyone  – providers, payers and most of all –patients.

When an advocate accompanies a patient to an appointment, less time may be required because the advocate will facilitate communication and the process. In a hospital setting, a bedside advocate will double check drug dosing and insist on hand washing, keeping the patient safe and providers out of hot water.

Payers benefit from the efforts of patient advocates, too.  Advocates help patients understand when a generic drug makes sense, or question a diagnosis before the wrong treatment is dispensed or performed, and therefore must be reimbursed. A billing or claims advocate knows how to file paperwork correctly, or reduce a hospital bill, saving time and expense for payers and patients.

Of course, advocates provide the biggest benefits to us patients. We can rely on our advocates to be focused on our improved outcomes and well-being.  Just like – once upon a time — we relied on our doctors.

Talk about disruptive! Rare is the case that an extra person in any relationship can improve the outcomes for everyone involved. 

But this is no fantasy. Patient advocates are skilled and ready to help.  Including an advocate in the medical care delivery equation can help us refocus on the possibilities of the good care that providers wish to deliver, payers are willing to pay for, and patients deserve to get.

By Regina Holliday. On Thursday night in an office space in Georgetown a crowd was forming. It was an after-hours crowd. The room was filling with advocates, artists, professors, and students. There were doctors, IT professionals, authors, and members of the community. There were mothers, fathers, grandparents and children. They had all come to see an exhibit of art.

This office was the shared space for Clinovations and Osmosis. The wonderful folks at Clinovations had suggested placing one of my paintings in their space to brighten up the blank white walls. Perhaps one of my paintings would support an even greater awareness of the need for patient-centered care. I thought, why stop with one painting why not many? Why not have an entire show and invite people from every facet of health care and beyond? I wanted to create a space for conversation and networking. I wanted people to get together and have some face time surrounded by art.

I envisioned a crowd of people thinking of ways to provide better care for patients everywhere. As I thought about this, I realized that this concept would be the focal piece of the show. Give Us Our Dammed Data is my first crowd-sourced painting, and it features quite a crowd. I wanted to paint a citizen army of patient advocate authors. I knew quite a few from Facebook and Twitter and had read their work. So I asked for suggestions from Dave DeBronkart, Trisha Torrey, Lisa Lindell and Helen Haskell. Between the five us we created a list of potential authors. Helen suggested I contact all of them and ask their permission to include them in the painting. With her help I found their addresses. I really enjoyed the give and take of emailing each author. I explained I wanted to paint them and their books.

And so another crowd gathered in Georgetown on Thursday night. They did not move or laugh. They did not drink wine or nibble the delicate appetizers. Instead, they stared down upon us with sorrowful smiles. In a room usually filled with laptop computers and hushed conversation hung a large painting picturing a crowd of authors. These authors’ books span 15 years, and all of them are telling a very similar tale.

17 authors with weapons in hand stare down upon the viewer. The three panel painting measures 60 inches by 144 inches. It is a very large painting, and yet it is crowded with many who have been hurt and many who have suffered. Every one of them is an author. Most of the authors in the painting took the hurt and outrage they felt about a dysfunctional medical system and channeled that into a book. That book is their shield and their pen is a spear.

These are people who have taken up arms in a battle they had never intended to fight. Note they are dressed only loose robes or hospital gowns. Their feet are bare. They dress as the supplicant or the pilgrim. They are on a mission. For some of the citizen soldiers it has been a very long path.

Journalist Michael Millenson’s Demanding Medical Excellence was published in 1997, and as you read it it is hard to comprehend it was written 13 years ago. It reads like it was written yesterday. So in the far left panel Michael’s back faces the viewer in the piece. The public has not been listening. He is turned toward a fellow advocate who will spread the word. He is speaking to Julia A. Hallisy who looks concerned. And so she should. (more…)

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.

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