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.

This series is about more than just the Sustainable Growth Rate (SGR), the Affordable Care Act (ACA) or Medicare and Medicaid; it is about delving into each candidate’s philosophies, beliefs and stances towards health care and health policy, and trying to determine what specific policies and reforms each might undertake.

Image courtesy of the Mobile Press-Register.

The editorial team and I are very excited to be launching this series, as we feel it will provide us the opportunity to address important issues during a significant year from a much different perspective and in much greater detail than the mainstream media is likely to discuss.

You can expect to see a lot of substantive political and policy analysis being put forth via the series in the coming weeks and months, but like I said earlier — one thing you definitely won’t see is bias towards one particular candidate (though our posts will certainly contain links to articles from other outlets that may or may not be biased, because we feel it is important to provide a survey of what others are saying on the topic). Help us make the series even better by letting us know what topics or specific policy areas you would like to see explored – we’ll do our best to incorporate your feedback into upcoming installments.

We’ll be back with our first full installment of the series in the next few weeks, but in the meantime, we’ve rounded up some related articles we think are worth reading:

• CNN takes a look at claims of Medicare fraud being made against Mitt Romney by a pro-Newt Gingrich super PAC
• NPR explores “Romney’s unlikely and persuasive defense of the ‘Individual Mandate’”
• WaPo discusses Rick Santorum’s position on abortion in the context of his personal experiences

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.

Even before HHS Chief Technology Officer Todd Park compared data to rocket fuel, the Summit was beginning to sound like President Kennedy’s speech to Congress announcing the Space Race. In fact, the addresses and panels were broken up by “Ignite Talks” — wherein private-sector stakeholders presented problems and issued challenges to attendees and to entrepreneurs across the country, offering not only prizes, but implementation funding for the best solutions (you can see a list with links to descriptions of the various challenges issued here).

Park best captured the sentiment of the Summit, saying, “There is no problem that Americans can’t invent themselves out of…Transformation driven by a tide of grassroots innovation mojo has already begun.”

While this sentiment and attitude towards repairing and revitalizing our nation’s health care system certainly drove the day, it is not new, nor is it exclusive to CMMI. In fact, it echoes many of the themes that motivated us to launch the Health in Place™ (HIP) initiative last month. The concept of HIP is built around the idea that, thanks to wireless communications and emerging technologies, our homes are more than ju

st houses, our offices are more than just workplaces, our schools are more than just places of learning and our cars are more than just modes of transportation — and that, for this facet of 21st century health care to achieve its full potential, a number of public policy issues are involved, cutting across multiple disciplines from health care regulations and benefit structures to tax policy and technology incentives. HIP aims to connect the dots between industries, inspire innovation and drive policy changes that accomplish CMMI’s goals of better health, better care and lower costs while simplifying things in the process.

With all of this collaboration and innovative thinking, there is no doubt that this is an exciting time in health care, but as Don Casey expressed in his closing remarks at the Summit, there are some significant obstacles to overcome to get the rockets to the moon. “I think a lot of people are skeptical about two things,” Casey said, “the American economy and do we have the ingenuity to get this stuff done, and can we actually engineer a jailbreak for health care.”

Are you planning to take part in any of the innovation challenges issued? Do you think cross-industry collaboration is really possible? And, what do you think we need to do in order to break down the barriers Casey and others at the Summit alluded to?

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.

I remember during the height of the Terri Schiavo controversy watching an attorney on the Today Show saying that spending 15 minutes filling out a living will would have solved the whole thing. Nothing could be further from the truth. Our research identified a whole host of problems with this idea – people often complete living wills that are very vague (“no heroic measures”), people’s preferences of life-sustaining intervention change over time as people’s health waxes and wanes, and even a quality living will doesn’t necessarily communicate wishes in a way that helps your loved ones (what we refer to as surrogate decision makers) predict your wishes any more accurate than they can without having seen that living will (could give you a paper site if you want one).

The best advice I can give is to talk to your family about your end of life medical wishes. This is especially crucial if you develop a medical condition where one possible trajectory is that it might leave you unable to communicate. I really don’t believe it is cost-effective to try to develop policy and law to encourage every 20-year-old to write a living will or take other elaborate measures like that. It is so unlikely that a Schiavo-like incident will happen to them, and even if it does, the situation they are trying to make decisions about is so inconceivably different from their current situation as a healthy 20-something, that it just isn’t worth a major societal investment to encourage that level of planning [editorial note: forget 20-year-olds -- an AP article published this week suggests that 64% of baby boomers also feel this way]. But as one gets older, and especially if future incapacitation is one possible outcome, that is the time when talking with your loved ones and your physician about your wishes for end-of-life treatment make sense, and it is a time when it all becomes psychological “real” enough to allow someone to really make reasonable wishes.

Let me also say though that completing a living will is not sufficient all by itself, but it helpful to think of it as a means rather than an end. The key is to make completing a living will the process that stimulates you to think about what you would really want – for both yourself and your loved ones – if you lost the ability to speak for yourself. And, most importantly, to make this an opportunity to talk to your loved ones – your spouse, children, whoever – and try to convey to them the core values and feelings that motivate your wishes.

Do you have any advice for families who find themselves in this situation but whose loved one did not leave a living will? Is there a precedent that should be used to guide decision-making in that case?

The advice I always give people is to simply try your best to take your own feelings out of the situation, and try to make the decision for your loved one that they would make for themselves if they were able. This is both something that I think makes good common sense, and if precisely consistent with the fundamental ethical principles that have always been held to guide end-of-life decision making.

That is, the goal of living wills and other forms of advance directives has always been to maintain an incapacitated person’s personal autonomy, their right to self-determination that is enshrined in the Constitution. But how can a person in a coma make decisions for themselves? They can’t directly, but if you make the decisions for them that they would have made for themselves, they your judgment can be substituted for theirs (hence the technical term substituted judgment) and it is as if they are making the decision for themselves.

It is a beautiful, elegant idea – especially if your substituted judgments are informed by documents or discussions completed prior to the person losing their decision making capacity – and as I said before it is terribly difficult to actually bring to fruition in real life. We are often not very good at predicting our loved ones wishes – think about the last time you totally miscalculated on a birthday or anniversary gift for your spouse – and complicated medical situations flooded with emotion are not likely to maximize the accuracy of your predictions.

But another finding from our research is that many, perhaps most people are more concerned with who makes judgments for them than in trying to micromanage the judgments that will be made. Many people say that the most important factor for them is that they want someone they trust to make judgments for them. They are happy in fact to let those people make judgments in real time, with all of the information available to them, and thus are more interested in appointing a trusted loved one as a designated surrogate rather than completing a detailed living will where they feel like they are ill-equipped to address specific and inherently probabilistic medical decisions.

This is why I think policy should be focused on encouraging opening up dialogue between physicians, patients and their loved ones – and encouraging the completion of durable powers of attorney for health care (legally appointing a surrogate/proxy) rather than long, complicated advance directive documents.  The focus should be on discussion not documents, and documents are most useful as a stimulus to dialogue.

Obviously the cost of care is a factor in any medical situation no one wants their family to become destitute as a result of paying for their care. How do you think changes to Medicare/Medicaid and long-term care [i.e. the repeal of the CLASS Act] might affect the public’s end-of-life wishes?

I will say upfront that I don’t know a lot about specific policy details, but regardless, here is what I do know.  No one wants to mix up end-of-life decisions with financial considerations. It is not about saving money, it is about allowing people to make their own decisions about prolonging their own lives versus letting go and not prolonging the process of dying. And versus someone else making that decision for them – whether it is ending their life prematurely, or the problem that most people really care about – which is continuing treatment past the point that it makes sense and leaves people suffering or losing their essential dignity. That is why end-of-life decision making works best in the context of a situation where medical care costs are irrelevant. It is only when people know they can get all the care they need, that they will be comfortable making decisions to forgo that care. It is important the people are provided the ability to get the care they need at the end-of-life, and that physicians are incentivized to discuss end-of-life concerns issues with their patients – not to counsel them to check out early, but to help that make the end-of-life as dignified and free of unnecessary suffering as it can be.

The ironic thing about all this is that virtually every analysis shows that the key problem in end-of-life care is overly aggressive treatment that has little chance of success and that the patients likely would not want if we could ask them. So if people are allowed to make their own decisions, and we invest resources in helping them do that in the most effective possible way, it actually would cut the exorbitant costs of end-of-life care in a natural, humane way that honors every American’s right to make their own choices about their own lives.

Thank you Dr. Ditto, we appreciate you taking the time to discuss this important element of the End of Life with us.

What do you think about living wills and advance directives? Do you and/or your loved ones have them? Do you know what your loved ones would want, should they [heaven forbid] be unable to speak for themselves? Tell us in the comment section below!

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.

There’s an entire site dedicated to clinician humor called GiggleMed.com – both ZDoggMD and Dr. Butt Meddler are featured there, along with a host of other find-the-funny MDs and RNs.

I even found a scholarly article entitled The Use of Humor to Promote Patient Centered Care – be warned, though, that (1) it’s a “scholarly article,” meaning that it’s probably had all the laughs surgically removed and (2) they want $34.00 for it. You have been warned.

What’s my point here? I actually have two:

1. Laughter really is the best medicine. Humor keeps us in touch with our humanity, and – unless it’s insult comedy, which I do not recommend in the health care arena, unless it’s insulting bad health care – it helps to comfort others in the same situation.
2. Patients and providers need to work together to help each other find the funny. If you’re a doctor, don’t just say “you’ve got [insert dread diagnosis here], here’s the treatment plan, call if you have any questions, … NEXT!” Look your patients in the eye, and channel your inner comedian whenever it’s appropriate. If you’re a patient, connect with other people in your situation and see how they’re finding the funny. And help your doctors find their funny. If they can’t find it, you should find another doctor.

We all need to work together to break each other up. Laughter can comfort, can calm, it can even heal.

That’s real disruptive health care, no prescription required.

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.

Rahim Kanani: In which areas of the world has this initiative been piloted, and what kind of impact has it had?

Kerry Kennedy: To date, the organization has conducted pilot programs in several regions, including in Haiti, Uganda, the Greater Gulf Coast, and Lwala, Kenya. Because Health eVillages is a new program, very much in the pilot phase, we’re still in the process of collecting detailed feedback and data on the outcomes of these devices; however, the initial feedback has been overwhelmingly positive.  We know we will need to alter the program in some cases – in the case of Uganda, we plan on adding solar charging skins to the devices so they can be used during medical outreach trips in rural areas – but we believe the model works well in many cases.

Rahim Kanani: When did you first test this technology?

Kerry Kennedy: The first time we really tested this technology was soon after the earthquake in Haiti.  I traveled to Haiti on a human rights mission, and Donato Tramuto, the CEO and vice chairman of Physicians Interactive Holdings, provided me with several of these phones. Donato also sent a half-dozen of the devices to Haiti with physicians and nurses. The response was extremely encouraging – and this is really how the idea for Health eVillages was formed.

Rahim Kanani: What are some of the limitations of this approach?

Kerry Kennedy: Language is a major limitation, of course.  We are currently in discussions with an organization that has developed incredible new technology that has the ability to translate software into a number of different languages.  This would allow for greater use of our software, which is currently available in only a few languages. We also recognize that smart phones with medical reference software are not the best solution in every setting. Much progress has been made using standard mobile phones and texting technology.  Organizations like Partners in Health have also made great strides at developing software for community health workers – workers who do not have the clinical background necessary to use our software.  However, we have identified a clear and certain need for our solution in a vast number of scenarios, and we hope to bring this program to as many practitioners as we can over the coming years.

Rahim Kanani: Where do we go from here?

Kerry Kennedy: We are in discussions with hardware partners to grow this program.  We are also looking into partnership opportunities with large, international aid groups to deploy these devices to their participating medical practitioners.  For now, we are very focused on refining the program and collecting strong, detailed feedback on what is working and what is not.

Rahim Kanani: How would you connect this initiative to the realization of fundamental human rights?

Kerry Kennedy: Article 25 of the Universal Declaration of Human Rights recognizes the right to healthcare for every man, woman and child.  We believe that this program will allow for greater access to quality healthcare for people who need it most.

Rahim Kanani is a writer, interviewer, advocate, strategist and entrepreneur for global social change. His articles, opinions, and interviews with global leaders can be found at www.rahimkanani.com. In addition, you can follow him on Facebook and Twitter.

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.

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.

Consider the staggering number that every single day, 1,000 women die due to pregnancy-related complications. Access to contraceptive supplies would mean that unintended pregnancies would drop by more than 70 percent every year. 150,000 maternal deaths would be avoided every year. And 600,000 children would not lose the love and care of their mothers.

Why is it that a private sector product like a Coca-Cola or a mobile phone can get to ‘customers’ yet much-needed health care information and products are beyond reach? This question has perplexed the global health community for decades.

WomanCare Global was founded in 2009 to address the profound problem of maternal mortality that has challenged the reproductive health field. The path is very clear and one word sums up the problem and the solution – ACCESS.  Our “hybrid” model is trying something new – a way of offering women hope because the emphasis is on access to affordable quality products for the women who need them most.  WomanCare Global recognizes the many challenges facing the distribution of healthcare technologies in underserved markets. All too often, pharmaceutical and device manufacturers decide not to invest in low resource settings, limiting product availability in much of the developing world. Additionally, supply-chain gaps keep products from reaching healthcare facilities, providers, and the women they serve.

By identifying innovative reproductive healthcare technologies and utilizing existing distribution channels, WomanCare Global promotes sustainable access to these critical products.

Family planning is one of the most important, cost-effective interventions available in the world today. Every woman, no matter where she lives, deserves access to the lifeline of information and affordable reproductive health products.

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.

4. You don’t state up front all the reasons for your visit.

If your ear hurts, your knee pops out when you run and you have a sty in your eye, state all three concerns at the beginning of the appointment so your doctor can plan your visit efficiently, advises Dr. Howard Beckman, an internist and clinical professor of medicine at the University of Rochester.

5. You don’t state up front your expectations for your visit.

If you have certain hopes or expectations — the doctor will pop that sty in your eye or prescribe antibiotics for your sore ear — say so. The doctor can then explain if your expectations are realistic, and you’ll be happier in the end.

“Sometimes patients are out of proportion to what the reality is, like the 44-year-old woman who hopes to get pregnant in one IVF cycle,” says Dr. Jamie Grifo, program director of the New York University Fertility Center. “If they don’t communicate their expectations, then I can’t address them.”

6. You don’t know what medications you’re taking.

“Patients should bring a list of medications they’re actually taking, not what they believe they are supposed to be taking, or what they think I want them to take,” Beckman advises.

If you take supplements, Rankin suggests you bring them in, since supplements aren’t standardized like prescription drugs, and your doctor will want to see all the ingredients.

7. You leave with unspoken questions and concerns.

If a question’s in your head, ask it, even if you think the doctor is rushed. If you’re worried your headache might be a brain tumor, say it even if you think you sound like a hypochondriac.

8. You don’t bring your medical records or images with you.

Yes, even in this day and age, many doctors rely on the fax machine to send medical records to and fro. Faxes goof up, so unless you absolutely, positively know your doctor has your records and images from another office, bring them with you, doctors advise.

9. You’re too scared to disagree with your doctor.

If your doctor suggests you need an antidepressant and you don’t want to take it, say so instead of nodding your head, taking the prescription and throwing it away the minute you’re out the door. Or if she suggests a medication you can’t afford, just say so.

“I know many of you are programmed not to question your doctor, but we can’t read your mind, so we need you to communicate,” Rankin says. “If the treatment plan I suggest doesn’t resonate with the intuitive wisdom of your Inner Healer, please tell me, instead of ignoring what I suggest.”

10. You don’t comply with the treatment plan.

For doctors, this is the granddaddy of them all. If you’ve followed all the advice above, you should have a treatment plan that makes sense to you and one you’re able to execute.

“Please follow through and do what you’ve agreed to do,” Rankin says. “And if you don’t, please tell me so I don’t mistakenly assume the treatment failed. I won’t jump all over you. I just need to know.”

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.

Additives in vaccines aren’t harmful.  Aluminum, the third most abundant element on the earth’s surface, is in the air we breathe, the water we drink and the food we eat. Aluminum in vaccines is less than a baby would receive in breast milk or infant formulas. Except in extremely rare cases of premature and already severely-ill children (who are not candidates for immunization in any case) it does not cause harm.

But there’s bad news:

Dr. Bob’s untested ‘alternative’ vaccine schedule should never have been published. It has never been tested; its impact on providing immunization protection is unknown. It’s not science based, is more likely to induce injection pain and needle phobia and increases the time during which kids are susceptible to vaccine-preventable disease – and that assumes that the schedule works at all to provide protection.

And there’s even more bad news:

Activist celebrities continue to drive unproven fearful claims about vaccine safety – and even disease prevention need – and the media is lovin’ the controversy. As a result, parents are overloaded with confusing, inaccurate information and far too often fear the vaccine more than the disease it prevents.

Activist-created misinformation and fear have made work tougher for Pediatricians. None of them in this meeting threatened to discontinue vaccinating kids, but quite reasonably, some complained about the additional effort. Let’s face their reality, it’s costing them more on several fronts:

• First, it requires extra time for parent education.
• Second, it distracts from other important developmental issues they’d like to address.
• Third, even when parents refuse vaccines for their kids and sign statements acknowledging the risks of disease, some later have the gall to sue the pediatrician when the kid gets sick! Huh?
• Fourth, when an unimmunized kid shows up in the waiting room, they drive up costs and infect others. Here’s the story of one: a family who voluntarily chose not to immunize their child traveled with the child to Switzerland, a country with no immunization requirements and low coverage rates. The child returned with measles and was taken by his mother on errands, including to Whole Foods, and then to the pediatrician’s office for the diagnosis the illness she could not recognize. Since the measles virus contaminates air spaces for 4 hours, this required that the pediatrician track-down every adult and child who had been in the waiting room during that time. Ironically, two infants too young for the MMR vaccine (they were under 18 months) were in the office for a well-baby visit and contracted the disease.

Despite the challenges, there is good news about how the experts are responding to anti-vaccine activists:  

Vaccine information groups are more active than ever. Every Child by Two has an increasingly active response to the anti-vaccine efforts and a good set of communications to parents about the diseases vaccines present at http://www.ecbt.org/parents/diseasevaccine.cfm.

The Immunization Action Coalition continues with its premier sourcing of information to health care professionals at http://www.immunize.org/.

The National Influenza Summit has grown and continues under the able direction of LJ Tan.  

Some pediatric practice groups are getting tougher on non-vaccinator parents. After lots of discussions, they’re asking non-vaccinator parents to find other doctors. A controversial, but I think long-overdue, action.

Hospitals view influenza immunization as a patient safety measure. Some hospitals are requiring influenza immunization for workers. These mandates, done carefully and correctly, are widely accepted as one of the many measures to keep patients safe.

Some ‘vaccinator’ parents are now calling for a ‘right to know’ if the other kids in their child’s classroom have been immunized. 

Surely we could do even better and here are my proposals. The first of these addresses the need to respect rights, which are a part of our national heritage of ethics, laws and regulations: 

Rights of adults, generally. Personally, I respect the rights of any person who decides they don’t want to put a vaccine into their body.

Rights of parents. I also respect the rights of parents who choose not to put vaccines into their children.

Rights of health care workers. I also respect the rights of health care workers who decide they don’t want to put a vaccine into their body.

But with rights, come responsibilities. Hold non-vaccinators responsible. When people voluntarily choose not to vaccinate themselves or parents voluntarily choose not to vaccine their children – that is, when there is no medical contraindication or religious objection – hold them accountable for the outcome.

Some say this can’t be done, but I’m a skeptic on that point. Litigation might not result in a successful result in the first attempts, but it would make for an interesting national discussion – one we’ve not had yet and so far, seem to lack the courage to undertake.

Be responsible adults.  If a voluntarily unimmunized adult brings influenza to the workplace, they should not receive paid sick days and should cover the cost of any temporary workers required to fill their slots. They might also be so gracious as to forgo seeking reimbursement for any care, since the illness might well have been prevented in the first place.

Be responsible parents towards other families. When a parent chooses voluntarily not to immunize their child they should be required to notify other families with whom their children are in regular contact – particularly in day care and school settings. In the event their child transmits the disease to another child, the family on the receiving end should be compensated, at the very least for medical costs and parents’ time off work. If the child suffers one of the many consequences of the disease – deafness in the case of measles, sterility in the case of mumps for boys, or death – additional compensation should be required. 

Be responsible parents towards health care settings. When a voluntarily unimmunized child arrives in a waiting room and health care providers must locate those who were in the waiting room in the same time to assure they are protected, they should be compensated by the nonvaccinator parents. Forther, parents should be precluded from suing physicians when they have signed waivers voluntarily acknowledging the prospect of disease and refusing the vaccine.

Be responsible health care workers. If voluntarily unimmunized health care workers transmit vaccine-preventable disease, at the very least, any additional cost of patient care due to the disease should be covered by the worker’s own resources or by the institution itself if it fails to develop immunization policies.

Like I said, even some of my vaccine buddies won’t like these ideas. They’ll have all kinds of ‘…yeah, but…’ things to say. But how much longer, really, can we afford to pay for the consequences of preventable disease? And before the epidemic of chronic, non-communicable diseases swamps us in costs and sick people, why can’t we get past a ‘rights only approach and sign-on for being more adult and taking some ‘responsibilities’ as well?

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.

Here’s what I’ve learned:

Being an advocate is about being curious, passionate and a seeker of information. For example, patient medical records are full of data that will help you close the gaps in care, should you or your family member need hospitalization.   Can you access your medical records quickly should you need to make a life or death decision?  The federal Health Insurance Portability and Accountability Act, which governs access to medical records, gives hospitals and doctors 30 days to respond to a request for medical records, although some state laws provide for a shorter time frame, and in urgent situations, such as a transfer to another hospital, it’s customary for hospitals to move more quickly.

Be prepared to make your request in writing and, to shorten the time frame, ask your physician’s office (the new physician in the case of patient transfer) to request them.

Remember, medical records are yours and they contain the doctor’s notes and instructions as well as diagnoses that often are communicated but likely not “heard” or “understood” by the patient or family.  

One way to get your medical records more quickly is to seek out providers who use electronic medical records so the records can be e-mailed to you. Some providers even have an electronic portal so you can read your records anytime you want on a secure Internet site.

In summary, it’s one thing to work in healthcare PR, creating the patient advocacy programs for large pharmaceutical companies but when its your family member who needs help, the word patient advocacy fills in with passion and purpose which is important but never enough.  You need to understand the system and how it’s broken to identify the gaps.

From a PR point of view, patient advocacy often helps pharmaceutical companies educate patients about a specific disease or treatment, but don’t forget their motives. That’s why is you ever need a patient advocate “on the ground”, it would be a good idea to check out Disruptive Women Trisha Torrey’s web site, AdvoConnections. (http://www.advoconnection.com/index.asp)

She is the ultimate patient advocate and has a wealth of personal experience, knowledge and connections to help you find and receive the best care possible for yourself or family member.  This is what I am learning is the meaning of patient advocacy.

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.

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.

This is Julia A. Hallisy, whose daughter, Kate, fought a losing battle with cancer in her short life. In 1997, Julia was well aware of the failings in our health system as she desperately tried to get an oxygen machine so her ten-year-old would be able to breathe as cancer was attacking her brain.

On the right side of Michael stands Janet Lynn Mitchell. In her book Taking a Stand she recounts her battle to walk after enduring 10 knee surgeries. Her many surgeries were due to a mistake during her original surgery. This was covered up and parts of the medical record were altered and “lost.”

Below Janet sits Martine Ehrenclou, author of Critical Conditions. Martine spent over a year guiding both her mother and godmother through medical wilderness. She saw so many hazards and “never events.” She was determined to create a book to help others survive their hospital stay.

To Martine’s left sits Evelyn V. McKnight, author of A Never Event. Evelyn contracted hepatitis along with 857 other cancer patients due to reused contaminated syringes.

Beside Evelyn sits Elizabeth Cohen, Senior Medical Correspondent with CNN. She will soon publish The Empowered Patient: How to Get the Right Diagnosis, Buy the Cheapest Drugs, Beat Your Insurance Company, and Get the Best Medical Care Every Time. She has used her years as a patient and a patient advocate for her family members to help others. Informed by years of reporting medical tragedies as a reporter, she too felt she must write a book.

In the far right panel on the lower right side sits Sorrel King. Hers is one of the sadder stories in this piece. She alone stares out of the frame and seems to make eye contact with someone who must be quite small…. Sorrel lost her daughter Josie. Josie was only 18 months old. Josie was recovering from a bad burn when she died from severe dehydration and unfortunate dose of narcotics. Sorrel knows intimately the importance of patient and caregiver access to medical record. Being able to read the orders in a record can save a life.

Seated behind Sorrel to the left is Lisa Lindell. Lisa wrote 108 Days. In her book she tells a day-to-day account of her successful campaign to keep her husband alive. She was astounded when she read her husband’s medical record. The nurse’s notes specified that she had an “unreasonable” belief that her husband should live. Beside Lisa sits Patrick Malone a malpractice attorney and patient rights activist, who wrote The Life You Save. Patrick lists nine necessary steps to getting the most out of the current medical system. The number one step is: Get a copy of your medical record.

Behind Patrick to his left stands Jari Holland Buck. She wrote Hospital Stay Handbook. She would understand the frustration of Lisa Lindell, as she too, kept her husband alive during his hospital stay.

Beside Jari stands Margo Corbett, the author of The Savvy Patient Toolkit. She became inspired to advocate after she was told her husband may not survive the night. She used all of her talent and past job experiences to create a handy checklist for patient care.

To Margo’s Left stands Carolyn Oliver,MD, who wrote Cautious Care: A Guide to Patients. This was the first patient empowerment book I ever read. Fred Trotter gave me a copy after I asked an access question before the crowd at Connect 2009 in DC. I loved it its simple and clear instructions.

Next in line is Sanjaya Kumar, MD author of Fatal Care. Dr. Kumar is dedicated to the improvement of patient safety and real time collection of data.In the center panel to left stands John James. He lost his son Alex at the age of 19. John was astounded when he read Alex’s medical record. He saw so many mistakes and examples of miscommunication that led to Alex’s death.

To John’s right stands Sandra Gilbert author of Wrongful Death. Her husband died during routine surgery. Her story recounts her efforts to grieve while trying to find out what exactly had happened.

In the center stand the ones who lived. Dave Debronkart author of Laugh, Sing and Eat Like a Pig and Trisha Torrey author of You bet your life, The 10 Mistakes Every Patient Makes complete our 17. They had a very different experience. They got access to their medical records; they fought the system and won. The title of the piece is a play on the words Dave spoke: “Gimme my damned data.” His phrase described the anger and frustration of all of us who have suffered so in a system where a patient sees a record only as an afterthought. I decided to expand on his comment and add an actual dam.

So in the middle of this painting stands a version of Hoover Dam labeled Meaning Use, HITECH. The data may still be dammed, but now it has begun to flow and it is pouring right into a laptop computer. We may have to wait three days, but due to government action, we will get access to our records.

This has been a long post. I may have lost some of you in listing all of the advocate authors. I hope you are still reading for there are two others in this picture.

To the far left stands Clay Shirky author of Cognitive Surplus, and to the right is Melinda Blau, author of Consequential Strangers. They are feeding the pack mules.

Every army must have pack mules. They supply the troops; they carry the supplies and are sure-footed on the mountainous path. If you haven’t read the books I would recommend them to be read together. Melinda reminds us of the power of all the people in our life. It is the friend’s friend who often gets us the job or finds us the right doctor. Clay Shirky informs us of the inherent potential in a world where thousands of people log on and data crunch with no other goal than doing good for others. He sees the future of medicine when it combines with the data aggregation of sites such as Patients Like Me.

So this is the story of Give Us Our Dammed Data. It is a painting that had 17 advocate authors. I could have painted more. I could have covered every wall in the Clinovations office space with advocates who are fighting for us. I stopped with 17.

Why? There are 17 people in 73 Cents. There are 17 pills in another piece at this exhibit, Sutent in a Shadow Box.

And I took up my shield and sword on June 17th 2009. My shield is a canvas and my sword is a paintbrush. I am so glad my art can create a space where these authors can look upon us as the mighty army they are. I am in awe of the work they have done. I hope you will feel the same.

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.

Many people suggested to Dave that he should write a book about his incredible journey.  But one man, Dave’s friend George Alexander, presented Dave with a tremendous gift:  he took Dave’s online journal and blogs, the essence of everything Dave had been through as well as the lessons learned, and through his Changing Outlook Press, worked with Dave to publish Laugh, Sing, and Eat Like a Pig: How an Empowered Patient Beat Stage IV Cancer (and What Healthcare Can Learn From It).  

The book, available on Amazon, pulls you in.  I couldn’t stop reading it.  Dave and I are Facebook friends, he follows Disruptive Women on Twitter, and I was very aware of his contributions to patient advocacy.  But it wasn’t until I sat down with the book and started at the beginning that I realized the phenomenal power of Dave and his work. 

The book is not only a page turning chronology of Dave’s story, but it contains very useful information: lessons in patient empowerment, thoughts on statistics and medical evidence, e-Patient white paper chapter summaries, and finding online support groups.  Not to mention it has introductory essays by two previous Disruptive Women in Health Care Men of the Month: Matthew Holt and Paul Levy.

E-Patients and Participatory Medicine:  An Advocate is Born

As Dave was no stranger to the online world and blogging prior to falling ill, he was invited by his primary care physician, (one year after his diagnosis) to join the annual retreat of the e-Patient Scholars Working Group, founded by the late Tom Ferguson MD (to whom Dave’s book is dedicated). “My mind just exploded.  That was January 2008, one year after my diagnosis.  I couldn’t stop reading everything on the epatients.net site – how e-patients can help us ‘heal’ health care – and I renamed my blog.  Good-bye Patient Dave, Hello e-Patient Dave.”

e-Patients: How They Can Help Us Heal Healthcare 

Since that time, e-Patient Dave has been very involved with the e-Patient and Participatory Medicine movement and is currently on the Board (a founding co-chair) of the Society for Participatory Medicine, a 501(c)3 public charity, which “aims to advance the understanding of physicians and other professionals in the importance of well-informed, empowered and engaged patients making informed decisions about their care and treatment.”  

As the Society’s website says:

Participatory Medicine is a movement in which networked patients shift from being mere passengers to responsible drivers of their health, and in which providers encourage and value them as full partners.

Today he’s applying his previous career experience, in marketing and public speaking, to evangelizing patient engagement. A keynote speaker who often leaves jaws dropping, he received an audience rating of 4.9 out of 5 at this year’s ICSI / IHI Colloquium. His busy fall schedule is at www.ePatientDave.com/schedule and videos of past talks can be seen at www.ePatientDave.com/speaking.

Dave reiterated to me that on-line access gets him access to information but doesn’t make him an oncologist.  But it does help him be an active participant in his care.

I asked him what advice he would like to share with other patients.  Here are some highlights:

• Empowerment is not just about using the Internet—speak up for what you want
• Trust Yourself – you can help far more than you might imagine—get engaged
• It’s absolutely vital for people to actively check and follow up with their health care professionals—to obtain lab results and other critical information

“Some day our medical system might be absolutely reliable to do everything right – until then, it behooves us all to be actively involved in our care….Patients can help—more than they realize.”

My second thought concerned forests, falling trees and sounds we may or may not hear.

The history of health care in the United States is, in large part, defined by sound policies and vital programs that are not accompanied by effective outreach to  the patients and consumers who have the most to gain from these innovations.  Thus, new provisions expanding preventive coverage have the potential to be like the proverbial tree falling in an empty forest.  If we don’t do a good job letting people know these services are more accessible, will they take advantage of them?

I think of the millions of people who are eligible for Medicaid or for Children’s Health Insurance Programs who aren’t enrolled.

I think of the widespread confusion that existed in the early days of the Medicare Part D prescription drug program until several organizations stepped in to conduct coast-to-coast information sessions with seniors.

And I think of the story that just appeared in the New York Times (http://www.nytimes.com/2010/07/15/health/15chen.html?_r=2&ref=health&pagewanted=print) regarding the growth in usage of the “medical home” model for health care.  (I prefer the term health home, but that’s for another post.) As Dr. Pauine Chen pointed out in the Times, empirical evidence is showing that the medical/health home – shorthand for greater care coordination between the patient’s primary care physician, specialists and other health care professionals – is working.  A demonstration project sponsored by the American Academy of Family Physicians showed that the new model was improving quality of care, efficiency of operations and physicians’ job satisfaction.

But patients hated it, because no one bothered explaining to them why their one-on-one relationship with their health provider was being replaced by a one-in-three or one-in-four relationship with multiple providers, even if it resulted in better care.

And, thus, does this new innovation in health care delivery fall within the proud history of U.S. health care in which great ideas are not linked with communication to the patient.

As health reform is implemented, both the public and private sectors need to do better, beginning with outreach to let people know about the new preventive care coverage and, more importantly, to ensure that Medicaid expansion and the new subsidies to help make private health insurance more affordable affect the people for whom they are intended.

To help improve things for children with CMCD as they transition into young adults , Physician-Parent Caregivers (PPC), is launching EMERGE–a new campaign  next week…stay tuned…I will be blogging more about that in the coming weeks.  

In the meantime, I would like to introduce a special PPC young adult leader, Amy Long.  Amy is one of America’s 8.2 million amazing young adults with CMCD who push through barrier after barrier and never give up on their dreams.  Amy gave me permission to share her first person account of what it is like to be a young adult with a chronic medical condition.  She calls it, the Google Circus.

GOOGLE Circus

Five years ago, I aged out of my pediatric skeletal dysplasia clinic (a place for kids with bone diseases).   I will never forget my first two adult medicine experiences….The first happened late one Fall evening. 

I was in college dorm my senior year and I woke up  from a late afternoon nap with a terrible headache, flashes of light and floating dots in my vision. I have a rare connective tissue disorder and form of arthritis called Kniest Syndrome that puts me at risk for a detached retina.  The flashes of light and floaters are common symptoms of retina disease.  Retina detachment is only fixable in the first 24 hours. I immediately called Student Health who told me they could get me into see an eye doctor next week.  I tried to explain that I couldn’t wait that long but no one seemed to take me seriously. All the doctors had left for the day. I called a friend and we drove the Emergency department.

We arrive. I spell Kniest no less than 3 times for the tirage nurses. They lead me back to the eye exam room and leave the door open with my chart hanging there. The doctor grabs my chart, starts to come in, looks at my file. His eyes widen and he backs out of the room. Through the open door I watch him try to Google Kiiest Syndrome.  He flips through the links and then finally after five minutes comes back in and sheepishly asks me, “So what exactly is going on?” I tell him, yeah I have a migraine-like headache, and I am seeing stars. I have a collagen disorder that causes high myopia and thus very fragile retinas. “Yes, yes, how exactly do you spell your condition?” I spell Kniest 2 more times.  I then watch him turn around and type Kniest Syndrome into Google.

That night had a happy ending– I had my first migraine, not a retina detachmen,t but I couldn’t help but be terrified of what could have happened had I been really sick and I had not had adult medicine doctors who understood my disease.

A few months later it was time to find a new orthopedist because I had a nagging, worsening hip pain.  This time I had traveled six hours by car with my Mom in tow to go see an expert in adults with arthritis.

The Orthopedics department was brand spanking new and is entire separate wing of the hosptial, Mom and I decided this was a good sign. Mom and I had taken two bets that morning, one, that I would be the youngest patient by 4 decades at least and two that the doctors would have no clue what Kniest was…I lost the first bet in the waiting room, although the majority of the patients were over the 4 decade line, there was a football player who destroyed his knee and a lady about Mom’s age.

I was absolutely shocked when we were called in exactly at our appointment time, seriously Mom and I nearly passed out from shock. This may in fact be the first orthopedist appointment ever that we were actually called back on time. I passed the tech my X-rays and sat down in the consult room. The consult room was conveniently located right across the hall from the X-ray reading room, putting mom and me in front row seats for the circus.

 A crowd began to gather, Mom and I exchanged knowing glances, shoot…Then because the circus needed some PR, one of the white coats, exclaims quite loudly “Holy Moly, would you look at that…” Even more people gathered around my films.  I put my face in my hands. Mom sighed and said “We should sell tickets.”

That was my transition experience.  I was either a circus side show and/or no one had a clue how to care for me. The Google circus was terrifying, frustrating and completely unnecessary.  There is a better way to do transition both for the patients and the doctors.

Today I had a totally different experience . I just moved to a new city and am starting my first job as a pediatric resident (aka intern…aka doctor in training).  Upon moving here I was referred to the Skeletal Dysplasia TRANSITIONAL clinic at the childrens hospital.  I was a little skeptical at first because I had not seen pediatric doctors in five years. Would they treat me like a little kid?  Would they expect me to bring my parents? (who live 500 miles away)  Would they bring in 50 residents/medical students (my colleagues?!?!) to see the new weird case?

I was led to a cheerful exam room with murals and bright colors. But despite the pediatric surroundings I was treated as an adult.  Only one doctor came to see me and he was well versed in my disease both in childhood and in adulthood. My physician spent over an hour with me reviewing my current health concerns, my past history and discussing all the exciting things that go with starting my first real job.  He spoke to me as a partner in my care and encouraged me to participate in coming up with a treatment plan. He helped me line up referrals for orthopedics and an eye doctor in town.  He also helped me come up with a plan to navigate some of the more challenging aspects of my new job.  We came up with an emergency plan if I get hurt or sick so that we make sure I am cared for by doctors who know about my disease and know me.

It wasn’t rocket science, it wasn’t even an act of Congress, what happened today happened because a small group of physicians, parents and young adults in the region have realized that children with CMCD here grow up but rarely do they grow out of their need for specialty care.  For a variety of complicated reasons, adult medicine rarely gets enough training in treating childhood onset diseases much less helping young adults thrive as independent and self sufficient. It takes clinics like the one I visited where pediatric and adult doctors work together to care for young adults with CMCD.  We have a looong way to go before this is the norm but as a patient and as a doctor I am excited about being part of the movement that makes it happen. 

Because no one should have to be a part of the Google circus.

Over the years, I have noticed an exponential increase in the number of professional health advocates and individual patient advocates.  Many advocates, not surprisingly, have been personally affected by illness–and the unbearable frustration that comes with having to not only focus on healing, but navigating multiple dysfunctional health care systems along the way–whether it’s poor quality care, misinformation, lack of information, difficulties finding health care professionals who meet individual needs, to name a few.  

Advocates are certainly not new, but what has changed are the availability of new online and mobile tools to connect advocates, their families, their friends, and others with similar situations.  The ability to organize, advocate, tell your story, through various mediums has fueled a new phase of patient advocacy– and given voice to what I see as a revolution.

Disruptive Women in Health Care is working on its newest e-book which will feature posts by a wide range of patient advocates–these stories and shared experiences will not only move you but will provide useful information so you too can advocate.  

Look for these posts throughout the summer, and send us your stories as well.

Paul F. Levy, Disruptive Women’s June 2010 Man of the Month, was appointed President and Chief Executive Officer of the Beth Israel Deaconess Medical Center in Boston in January 2002.  BIDMC is one of the nation’s preeminent academic health centers, providing state-of-the-art clinical care, research, and teaching in affiliation with Harvard Medical School.  Previously, Mr. Levy was the Executive Dean for Administration at Harvard Medical School, where he was responsible for administrative, budgetary, and facility issues, as well as community and governmental relations.  He was also involved in coordinating collaborative ventures between HMS and its affiliated hospitals.  Before joining Harvard Medical School, Paul Levy was Adjunct Professor of Environmental Policy at MIT, where he taught infrastructure planning and development and environmental policy for seven years.  Mr. Levy has served as Executive Director of the Massachusetts Water Resources Authority, Chairman of the Massachusetts Department of Public Utilities, and Director of the Arkansas Department of Energy.

Ever since I created the Disruptive Women in Health Care blog, I wanted to meet Paul Levy.  Who was this guy who boldly started blogging when most executives in health care either didn’t know what blogging was or were frightened by legal into thinking that blog was a 4-letter word?  His blog, Running a Hospital, is “a blog started by a CEO of a large Boston hospital to share thoughts about hospitals, medicine, and health care issues.”

I recently spoke with Paul and the first thing I asked him was Why Blog?  Here’s what he had to say:

Why did you decide to blog?  Was there one incident that propelled you, an aha moment, or had you been thinking about it for a while? Paul simply said, “It was a lark.”  He explained that in August ’06 he was reading a New York Times article about how executives don’t blog.  “Being a contrarian, I started blogging.  It was an excuse to learn.”  Paul mentioned that the Boston Globe took notice, wrote about his blogging and then it was “off to the races.”  He added that he’s obsessed by blogging…in a good way.  “It helps consolidate my thinking.”

As you reflect back over your years of blogging, what have you learned? “I hadn’t realized the power of blogging until I actually did it.”  He gave me an example: One of his top priorities at BIDMC is a major emphasis on quality and safety, eliminating preventable harm.  Paul experimented by using his blog to publish infection rates and clinical outcomes. “I didn’t worry or think about how unusual it was—I just did it.” [Pretty disruptive of him—I knew I liked this guy]. He discovered that the blog served as “an incredibly powerful, transformative management tool.”  The blog became the vehicle that allowed everyone in the organization to see the data, to see how they were doing.  An audacious goal was established, and the blog enabled everyone in the hospital to track progress. According to Paul, publishing the data on his blog helped foster the desire to meet the goal.  “The approach was well received and appreciated. And, it created no legal problems.”

Since last week’s Health 2.0 conference in Washington DC was fresh in my mind I asked Paul, What do you think of the blossoming Health 2.0 phenomena…what is it’s promise and what work needs to be done? He once again stressed that the value of Health 2.0, and social media in general, lies in the ability of these tools to provide a way for people to share and exchange data, information and ideas. “They support a community of interest.”

We talked for some time about how unfortunate it was that health care companies, particularly those in the life sciences, fear they will be criticized—or worse, if they take the social media plunge.  We also agreed that the real power of these tools reside in patient advocacy—enabling people to actively participate in their own health.

I have to ask—health reform—as a veteran of the Massachusetts experience, what do you think about where we are and where we are headed? “Massachusetts is prologue for the country as a whole.  We certainly had a head start with reform, likewise with the cost implications.  We are working through all that.”  Paul stressed to me that the costs were under-estimated in the law and the delivery system is still a mess.  He doesn’t see the government fixing that. “We won’t improve the delivery system by government fiat; it has to come from the profession.”

Any words of wisdom to share as we conclude our conversation? “Please, be disruptive… disruption and imagination are the driving forces for change.”