Disruptive Women is proud to annouce our December Man of the Month Claude Gerstle. Claude was dedicated to patient care for over thirty years before he became disabled in a bicycle accident. He founded a full service ophthalmologic clinical practice that focused on the diagnosis, management and surgical/medical treatment of ocular diseases. Though Dr. Gerstle can no longer serve his patients needs, he still loves medicine and science. He has always been active in MIT, where he graduated in ’68. For the last three years he has been a trustee of MIT’s Corporation.

By Claude Gerstle. I became involved with stem cell research eight years ago after I suffered a spinal cord injury while riding my bicycle. Once I was well enough to travel, my daughter took a leave of absence from work and we spent two years traveling around the country visiting doctors, ethicists and politicians making a documentary about the social issues raised by embryonic stem cell research (TheAccidentalAdvocate.com). I became very excited about stem cell research and its potential to provide treatment for some of our most intractable diseases.

In 2005 Dr. Hans Keirstead atUniversityof California Irvine published some remarkable results demonstrating the ability of a stem cell treatment to enable spinal cord injured rats to walk again. Cheer on Corporation applied to the FDA for clinical studies using his technique. There drug application, over 20,000 pages long, took almost 6 years to receive approval. Despite all their hard work, in November 2011 they announced they were pulling the plug on this research project because they will not be able to afford the money and time needed to make a commercially viable product.

While disappointing, this is not the death knell of clinical stem cell research. As an ophthalmologist I recently chaired a panel of stem cell researchers who have made impressive progress working on retinitis pigmentosa and macular degeneration. Treating an eye disease has some advantages over treating a disease of the nervous system. Cells introduced into the eye are in a more confined space and less likely to migrate out of the area. Treatment can be done in one eye without affecting the other eye and the natural history of the disease is better understood allowing treatment to be started an earlier stage where less damage has occurred.

How can I be so upbeat about the future of stem cell research? The answer is that we learned so much more about the growth and differentiation of stem cells. We have learned to tag the cells we want and separate them from the soup of other cells much as you would separate pennies, quarters and dimes so that we can deal with a pure and stable product for transplantation. We understand the factors involved in cell rejection and can protect foreign cells more effectively. Last but not least, we can take a cell biopsy and grow it into the desired cell type we want for a particular individual.

Macular degeneration is the leading cause of blindness in the developed world. It’s only in the last 10 years that we’ve been able to discover specific genes associated with macular degeneration and the results have been very surprising. Most common form of macular degeneration, dry macular degeneration, is most closely associated with the gene for complement factor H, a substance involved in controlling inflammation and having nothing to do with vision itself. This was a huge surprise. For years we thought that macular degeneration was due to a defect in the photoreceptor cells (rods and cones) or the retinal pigment epithelial cells (RPE), a monolayer cells underneath the photoreceptors whose integrity seems necessary for their nutrition and survival. We’ve known for some time that the retina overlying a damaged area of RPE can become functional when transferred onto an area of intact RPE within the same eye. In animal models, RPE cells grown from embryonic stem cells or fetal tissue have been transplanted as either dissociated cells or sheets of cells with return of retinal function. Some people questioned whether this would be successful in humans because as Lucian del Priore demonstrated that in the adult human, transplanted RPE cells do not survive well because of contact with exposed collagen. Peter Coffey at University College London has overcome this by implanting the cells as a sheet on top of a piece of very thin plastic.

Even more exciting, embryonic stem cells may be unnecessary. Trans-differentiation, the process of transforming one adult cell into a different type of adult cell may obviate the need to use embryonic stem cells. Deepak Lamba has derived RPE and retinal precursor cells from adult cells using the gene modifications discovered by S. Yamanaka. Recently, Rudy Jaenisch at MIT has been able to transform fibroblasts from a rats tail into functioning neurons.

Clinical trials to treat macular degeneration are now underway by Robert Lanza at Advanced Cell Technology using disaggregated RPE cells derived from human embryonic stem cells and by Dr. Coffey using sheets of cells on plastic. Herman Klassen at UCI has gone a step further and, using neural precursor cells isolated from a human fetus has been able to demonstrate their differentiation into functioning photoreceptor cells in animals.

We are witnessing a revolution in medical treatment. For hundreds of years we had treatments based on small molecules; everything from aspirin to anticancer drugs. 20 years ago began gene therapy using viruses and now we have entered the era of cellular treatment of disease.

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!

Steve Jobs 1955-2011

The day before my daughter Elise’s 15th birthday, the new iPhone went on sale.  My birthday was 4 days later.  So Elise figured out we should buy each other an iPhone to mark our big days.  She planned (and saved) for months.  She spent weeks talking to friends, researching apps on line, planning for such accessories as protective covers, and educating herself on how to maximize her minutes.

When the big day came, we made our way to the Apple store and stood shoulder to shoulder with hundreds of others waiting on a very long line.  Two and a half hours later we were invited, actually escorted, in to the store by an extremely friendly, knowledgeable young man who stayed with us during the entire purchase transaction.

He answered tons of questions (mine, not Elise’s…she already knew everything), politely reviewed various functions with me (Elise was extremely patient during this process), and made great suggestions about which plan was best for us.

While we were waiting on line, I looked around at the people waiting with us–we were an extremely diverse group–and wondered (a) Why in the world were we all willing to wait hours to buy a telephone, a very expensive telephone?  (b) How did the folks at Apple get us to this point? and (c) What lessons could we take away and apply to health care?

Here’s what I came up with:

Cool. The iPhone is not your mother’s rotary dial wall phone.  The engineers and creative types figured out how to make a very uncool, but necessary, object not only aesthetically pleasing, edgy, and fun, but useful, convenient, and easy to use.  They stimulated demand.

Now if the Apple  folks could only do for colonoscopies what they did for telephones.  I am only half joking.  How do we make taking care of ourselves and our loved ones cool?  How do we make boring, sometimes not so pleasant preventive measures cool and edgy?

Hospitals are scary places–while some newer facilities have made efforts to look more appealing (open atriums with green trees, brighter colors and lighting), many are dark, smell strange, are old and creaky, have tons of frightening tubes, machines, noises, and for most people are places to be feared and avoided.

What amenities can be added to make it harder for patients to find excuses not to get that mammogram (valet parking, anyone?), not to go for that follow up, not to just give up and leave after waiting for two and a half hours in the waiting room (Elise and I waited that long–and the friendly folks at Apple handed out water, and updated us on our progress).  The only water I could find in my local hospital emergency room last week (when we were there with my son) was a nasty water fountain that had stuff in it that would make a petri dish cringe.  There were vending machines with chips, candy and soda, but it was broken.

Service. Imagine for a minute that when you enter a clinic, doctor’s office, or hospital, you are accompanied by a knowledgeable, helpful, pleasant individual who can speak to you in a non-condescending, judgmental manner, in language that you understand.  Someone who can help you navigate a complex system of decision making.

Quality. Pretty obvious attribute.  Quick–think Mayo, Cleveland Clinic, Johns Hopkins.  What is it about these institutions that people think of when asked to list “best” hospitals.  How do you (should you?) rate different doctors? Nurses?  Most people buy the iPhone because they believe they are buying a high quality product.  How can we be sure we are buying high quality health care?

It’s interesting when you look at the literature.  Quality is defined in many different ways by health care professionals and by patients.  Sure there’s overlap.  But in addition to better health outcomes, living longer and better–patients highly rank items such as convenience, hours of operation, waiting times, and location as quality indicators.  Apple stores have better hours than most clinics and physician offices.  My dog’s vet has better hours than most doctors.

Value. Why was a 15 year old willing to save her hard earned money for an expensive phone (and why was I willing to pay not insignificant monthly charges) for the iPhone?  Because we thought it was worth it.

If only we could figure out a way to get people to see that it’s worth it to exercise, eat healthy, get annual check ups, not smoke… and get that colonoscopy.

Francis S. Collins, MD, PhD is the Director of the National Institutes of Health and because of  his work and leadership is Disruptive Women in Health Care’s June Man of the Month. Dr. Collins wrote the article below which was originally posted in The Huffington Post on June 15th. This article is a perfect example of why he is our Man of the Month for June.

Broadening Our Global Health Vision

Over the past few decades, global health research has primarily focused on the “big three” diseases: AIDS, TB and malaria. And, thanks in large part to biomedical innovation, we today have better ways to treat these dreaded, infectious diseases and lower the risk of transmission — advances that have saved millions of lives and promise to save countless more.

However, the job of biomedical research is far from over. Given the changing nature of the global health landscape, we must act now to broaden our vision even further. First, we need to apply the power of scientific innovation to more health problems. Secondly, we need to recognize that developed nations are not the only source of such innovation.

While infectious diseases remain a significant problem, low-income nations face many other serious health challenges. In fact, the fastest growing causes of death and disability in the developing world are injuries, such as those caused by traffic accidents, and non-communicable diseases, such as cancer, heart disease and diabetes.

It will be no easy task to identify and implement the right tools to tackle this formidable — and potentially very costly — array of problems in resource-poor countries. To succeed, we will need the brightest minds in all parts of the world, including those from both the public and private sectors, to work together in new and highly creative ways.

As an example of such an approach, the National Institutes of Health (NIH) and the Wellcome Trust, a global charity based in London, recently formed a partnership to support population-based studies in Africa of common, chronic disorders, as well as infectious diseases. That effort, called Human Heredity and Health in Africa (H3 Africa) project, will enable African researchers to take advantage of new research approaches to understand both genetic and non-genetic factors that contribute to risk of illness. Not only will this help people living in Africa, but, since Africa is the cradle of humanity, what is learned about genetic variation and disease likely will have an impact on the health of populations around the globe.

The H3 Africa project also illustrates the second way in which we need to broaden our vision of global health. Rather than seeing biomedical innovation as something that flows from developed nations to low-income nations, we need to start viewing innovation as a two-way street from which the entire world stands to benefit. As global health advocate Lord Nigel Crisp so aptly puts it: “Innovation is happening everywhere.”

Recently, some of the most creative — and cost-effective — strategies for medical products and procedures have arisen from research that reflects the needs and ideas of people living in poorer countries. Such innovations include: a quarter-sized microscope that can transmit high-quality images via a mobile phone, lower cost intraocular lenses for cataract surgery, non-surgical methods for treating clubfoot, a high-performance prosthetic knee joint for amputees that costs only $20, a cheaper way to deliver IV fluids to children and an inexpensive, non-electronic device to warm premature babies. While some of these innovations are tailored to the specific needs of developing nations, others may come in handy in the United States — particularly in remote areas or low-resource settings.

So, as a nation, let us renew and strengthen our commitment to biomedical research aimed at improving the health of the world’s poorest peoples. It just might improve our own.

Lee Kirksey

Interview by Disruptive Woman Glenna Crooks.

Meet vascular surgeon Lee Kirksey, MD, MBA. He is assistant professor at The University of Pennsylvania School of Medicine, with a surgical practice based in Philadelphia. His concerns transcend those of his own surgical expertise, his own patients and this region, however.  He is an ardent, engaged, articulate spokesman for cultural competence in health care.

I think about cultural competence sometimes, but I really ‘got it’ talking with him; for the first time seeing how cultural incompetence impacted my family. Here’s the story: a number of years ago as my Father lay in a coma, the physician in charge of his care refused to speak with my Mother. It required an attorney and intervention of hospital administrators to learn any information about my Dad’s condition. His physician – of Asian origin and training – lacked the requisite skills in cultural competency to view my Mom as entitled to a discussion about my Dad. His deficiency brought considerable unnecessary suffering to our entire family. The physician was culturally incompetent.

How did you become interested in cultural competency?

I began to see how cultural competency played a role, not just in health care but in life in general. In a nation that is increasingly more diverse, we are more frequently interacting with people that may look different and possess a different set of cultural beliefs and values.  That is a good thing; there is a lot that we learn about one another. When it comes to health care delivery, when those differences are not acknowledged or managed thoughtfully, it can affect our ability to deliver consistent, high-quality health care.

I saw how some groups experience disproportionately worse outcomes in health compared to others and how disparities begin even before those groups enter the health care system. To make matters worse, it continues while they are in the system and after they leave it.

Ultimately, these disparities create worse outcomes for acute and chronic medical conditions. That’s bad for the patient and it’s bad for the health system. It costs our health care systems more to provide what becomes low-quality care. Because of that, at the end of the day, I know I can’t possibly accomplish my goals as a clinician to help patients to really be healthy.

But there’s more: I saw that cultural incompetency affected groups we don’t usually think of.  Yes, some health disparity happens along socioeconomic lines but cultural incompetency affects women, older people and those with religious, ethnic and racial differences from their clinicians as well.   

Yes, it was in our discussion I realized how that had played out in my own family.  

That – and my own revelations about this – are very profound examples of how medical school and seven years of postgraduate training taught me lots about surgery and managing patient’s clinical problems but not much about some equally important issues at the interface of health care: the physician-to-patient interaction.

I found myself on the front line of the crisis in confidence about health care and to address that, began to learn and appreciate more about cultural competence. As the saying goes; either you’re part of the problem or the solution.

I saw the ways that core beliefs, cultural mores, perceptions of health and social circumstances impact the way a patient interacts with me and everyone else providing care.  For example, as a physician treating an older Latino gentleman who speaks English as a second language, if I prescribe a medication with potential side affects, I need to make sure my practice can provide an appropriate translation of this technical information. I also need to understand how his culture may affect his willingness to speak with me about the side affects in the presence of his daughters. In preparing to talk with him about surgery, I need to appreciate what cultural dynamics will dictate who else should be present for that conversation.

So you see this as a big deal?

Yes. Everywhere I look, I see an America that’s becoming more diverse. By 2050, greater than half of America will be composed of groups that were previously minorities. The greatest growth will occur in Hispanics/Latinos and Asians, greater than the previous influx of eastern Europeans.

But there’s even more, right?

Yes, on the other side of the changing landscape, the ethnic and cultural makeup of the physician/nursing workforce continues to evolve.  The chances of every patient having a health care provider who does not look or think like them will increase.  Our physician workforce looks a lot different now than it did twenty years ago. This was the case for your family as your Dad lay dying and further underscores the importance of integrating cultural competence into training.

Diversity need not be threatening; it can be good news. Look, the diversity of America has always been – and will continue to be – an important driver of innovation and productivity.  As in other industries, health care must address the changing, diverse face of America and prepare to manage the change in a way that’s proactive – not reactive.

And what happens if we fail?

We’ll see more of the same – more health care dollars spent disproportionately on certain patient groups who will have an even greater number and more severe chronic diseases, especially diabetes, heart attack and stroke.  Some of the groups affected greatest by health disparities and lacking culturally competent care will double or triple in population size in the coming decades.  Latinos, for example, are disproportionately affected by diabetes one of the most expensive chronic diseases because of the associated increased risk of heart attacks, strokes, blindness, kidney failure and limb amputation.  If we don’t address cultural competency successfully, there is a high price to pay both monetarily and in terms of social justice. I try to keep most of the discussion focused on the “business case” because, in reality, that’s the critical issue that determines how a decision is made to allocate time and resources to a challenge; however, the social impact on those groups that we’re leaving behind deserves considerable thought as well.

As a physician, how do you see the issue of cultural competence play out on a day-to-day basis?

My perspective comes from my experience as a surgeon treating patients with cardiovascular diseases. Others may have different views, but I see this: We know now that communication is an important part of treating our patients. 

Since more than 25% of Americans speak a second language at home, it is critical that our standards include translation services in hospitals and outpatient settings. It no longer suffices to pull a family member into the exam room to have a jargon-filled medical discussion with a family that speaks English as a second language. That risks unintentional mistranslation by someone who lacks medical training and may violate cultural norms in groups that do not traditionally involve some family members in the private affairs of another. Trained medical interpreters and appropriate written tools available at the patient’s literacy level are essential.

When these culturally sensitive tools are not available, miscommunication results in more labs, more tests, medication errors and poor patient outcomes. We’d all like to improve efficiency and reduce medical errors and reducing Health Disparities with culturally competent clinicians is a viable solution.

What, specifically, are you trying to achieve?  

I want to help deliver the best care to every patient – not just my own – by increasing the cultural competence of each physician, nurse, pharmacist and staff member.  The failure to recognize the importance of cultural competence and the impact that it has on health care delivery is a public health problem that requires changes in our current medical culture and health care policy. Ultimately, the delivery of health care is a face-to-face interaction between physician and patient, nurse and patient, and so on and the changes in the culture must target and improve this basic everyday human interaction. We know that this change must occur on a personal level in a face-to-face interaction because of the special way that health care is delivered.

Working with others, I am attempting to pass legislation to mandate physicians and other health care delivery personnel receive continuing medical education training in cultural competency in The Commonwealth of Pennsylvania. This would be incorporated into already-existing requirements for newly licensed or relicensing of physicians.  It is a reasonable first step acknowledging and addressing critical cultural competence skills – skills that impact patient’s outcomes every day.

I can talk for hours about the nuances of cultural competence, but personal experience speaks volumes. Many of those I meet who have negative interactions with healthcare providers can trace those in some way to deficient cultural competence. Your family’s own experience is a good example, even though you did not realize it at the time.  It affects everyone – even the highly educated and economically advantaged. 

You said you are working with others in Pennsylvania.  

Yes. State Representative, Ron Waters, Chairman of the Pennsylvania State Legislative Black Caucus is a key driver of this effort, and medical societies in the state such as the The Gateway Medical Association in Pittsburgh support the effort as well. At the University of Pennsylvania, we are developing and restructuring cultural competency curricula for surgical and medical resident training.

Representative Waters is the legislative champion that is essential for this type of paradigm changing policy initiative. Not only has he introduced the resolution at the state level but he has also successfully introduced the resolution to the National Caucus of State Legislators so that it is on the table for consideration in a number of states.

Finally, Congresswoman Donna Christenson, Chairperson of The Healthcare Braintrust for the Congressional Black Caucus, after hearing Congressional testimony on our efforts in Pennsylvania has her office working on a similar bill to be introduced in Congress.

The current economic environment places cost controls at the forefront of our discussions. We know that inefficient care and poor outcomes that result from culturally deficient care are quite costly and can be reduced by successfully improving cultural competence. We don’t miss any opportunity to point that out.  Health Disparity and cultural competence is such an important issue that has extreme importance on an individual basis and huge implications at a macro economic level.  The commonwealth needs this.

Are other states doing likewise?

New Jersey was a vanguard, creating CME mandate legislation in 2005.  Five states have followed suit:  WA, CA, CT, NM, MD, and five others are considering legislation now including OH, NY, KY, GA, AZ.  

It seems overly simple and most folks dislike mandates. Are you getting any pushback? Are you encountering objections to mandated CME?

We’re not really encountering any resistance. This is an important first step and is made in concert with other initiatives by the Joint Commission, which has cultural competency requirements for hospitals accreditation. 

You’ve been working on this for a while and I know you have plans to expand your efforts.  Can you share some of that now?

Our mission is not occurring in a vacuum. The general trend is towards improving the efficiency of health care that we provide to all. My new book The Wellness Revolution: Eliminating Disparity and Promoting Prevention…For All, (Mill City, May 2011) describes the culmination of factors that have resulted in America’s health care crisis.  We have new health care reform legislation in the form of the Affordable Care Act but I think the question on most people’s minds is “what does health care reform mean and how will it affect me and my family.”  Regardless of what reform looks like in ten years, I offer some practical ideas of how we should prepare moving forward.  For instance, one area of immediate concern no matter what happens is the reduction of medical errors.  I devote an entire chapter to understanding this concept and provide practical tips for you, the health care consumer, to avoid becoming a victim of medical errors.

I have a number of other ideas, but don’t want to talk too much about them now. This initial legislation is so important that I intend to keep cultural competence legislation ‘front and center’ for the immediate future.

I’ll hint at the future by saying the think tank The Center for Health Improvement and Community Development is a unique organization that looks at public health using an ecosystem model with the individual at the center of a complex interaction of environmental factors.  By most estimates anywhere from 50-70% of our health can be attributed to what happens to us before we ever enter the doctor’s office or the halls of a hospital.  That is to say that where we live, learn, work and play has a tremendous impact in determining how healthy we are. Yes, we all require health care but the fact is that the physical environment that some people live in, their access to health promoting factors and the absence of other harmful factors give some groups a decided advantage with regards to the health of the individual and community. The fact of the matter is that many diseases are preventable and their incidence can be significantly reduced.

Individual health is clearly the most important determinant of how successful a person will be. This is true for all Americans.  So from that perspective, the healthy individual has some degree of an advantage when taking on life’s challenges. The burden of illness reduces one’s ability to compete for a sound education, seek gainful employment and upward mobility, provide social and economic stability to one’s family, live a quality post-retirement life and transfer generational wealth.

The health care system contributes only 20-30% to an individual’s health. Our physical and social environment contributes 15%. Where we live, work, learn and play all work in concert to determine our health as well and in the best of circumstances support our own personal activities that contributes 40% to our health. We identify capital projects that reinvest within communities and are the economic engine to improve these important social determinants of health. For these large-scale projects, we provide complete financing for the project or we structure creative public-private partnerships. One current project is a University area senior extended living facility.

Thanks so much Lee, I’m sure we’ll be speaking with you again! For those who want to keep pace with your current – and future – efforts, what’s the best way?

http://blog.leekirkseymd.com

Edward Grandi

“Women need their sleep,” says Edward Grandi, Disruptive Women’s March Man of the Month. Grandi is the Executive Director of the American Sleep Apnea Association (ASAA), the leading non-profit organization dedicated to educating the public and the medical community about sleep apnea, supporting those in treatment for the condition, and advocating on behalf of patients and their families.

Grandi discussed a common misperception he felt Disruptive Women readers should be aware of – obstructive sleep apnea (OSA) is an ailment of middle-aged, overweight men. While it is true that twice as many men as women have OSA, after menopause women are affected in the same numbers as men.

OSA is caused by a blockage of the airway, usually when the soft tissue in the rear of the throat collapses and closes during sleep. Sleep apnea is as common as adult diabetes, affecting more than twelve million Americans, according to the National Institutes of Health. Sleep apnea can strike anyone at any age, even children. Because of the lack of awareness by the public and health care professionals, the vast majority of OSA cases remain undiagnosed and therefore untreated.

The misperception that women are not as prone to OSA as men has dangerous consequences. Women who complain to their health care providers about being tired, putting on weight, losing interest in sex, are often misdiagnosed with depression. They are then likely to be prescribed medications that can only make their situation worse.

Providers unfamiliar with sleep apnea don’t ask the obvious question: “Do you snore?” Other pertinent questions that health care professionals should pose: “Do you have unrestful sleep? Do you awaken with a headache? Do you find yourself making frequent trips to the bathroom at night?”

While snoring itself is not necessarily diagnostic of sleep apnea, in combination with the symptoms mentioned above, it indicates that there is a problem that requires treatment. Sleep apnea does not just rob women of much-needed sleep. It has serious health consequences, such as heart disease, diabetes, and yes, depression.

There are different treatment options for OSA. The right option is determined by the severity of your sleep apnea (from a sleep study), the physical structure of your upper airway, and other aspects of your medical history. The various options are positional therapy, weight loss, avoidance of alcohol and other CNS depressants, oral appliances, surgery, and Positive Airway Pressure therapy.

The takeaway from all this, Grandi says, is “Women should be aware that they can be affected by OSA which luckily is very treatable. Know the symptoms and be prepared to question your provider if they don’t consider OSA as a diagnosis. Bottom line…we all need sleep.”

The ASAA is the leading source of information about sleep apnea diagnosis and treatment. Disruptive women everywhere are encouraged to visit their newly updated website for more information.

Rick Guidotti

Rick Guidotti began his career focusing, like most fashion and portraiture photographers, on capturing traditional beauty. Educated at New York’s School of Visual Arts and based in Manhattan, Guidotti enjoyed the glamorous life of a successful high fashion photographer – snapping shots of conventional beauties for clients like Yves Saint Laurent, Elle and Harper’s Bazaar in traditionally beautiful places like Milan, Paris and London.

But all of that changed in 1997, when Guidotti was drawn to focus his work on a different type of beauty – the “beauty of genetic diversity.” Seeking to gain attention for this beauty he had discovered, Guidotti joined forces with Diane McLean, MD, PhD, MPH and together, the pair founded Positive Exposure (PE) – “a nonprofit organization that challenges stigma associated with difference by pioneering a new vision of the beauty and richness of genetic diversity.” The organization “utilizes the visual arts to significantly impact the fields of genetics, mental health and human rights” by forging “cross-sector partnerships with health advocacy organizations, governmental agencies and educational institutions.” 

PE does not just display Rick’s photos, though. They sponsor a number of initiatives and programs aimed at concurrently capturing the beauty of those suffering from genetic conditions and educating the broader public about them.

Still, they’re known best for their flagship undertaking – the Spirit of Difference gallery, which is a collection of images and video interviews of people, particularly children, living with various genetic conditions. PE has an online version of the Spirit of Difference gallery that you can check out here.

That’s not all PE does to impact and improve the lives of those living with these conditions, though. The organization sponsors and puts on “Self-Esteem/Self-Advocacy photographic and interview workshops” and “diversity workshops” and conducts “portable, sustainable educational and human rights programs and multi media exhibitions for physicians, nurses, genetic counselors, health care professionals-in-training, universities, elementary and secondary schools, legislators and the general public” around the country and the world. Using the photos and video interviews that Rick has taken, presenters (oftentimes Rick himself) shed light on not only the beauty but the unique spirit of his subjects, helping people to look past the differences created by their conditions and see that special, indescribable quality that so captivated Rick some 14 years ago.

But don’t just take my word for it. Check out one of Rick’s presentations, entitled “Redefining Beauty”.  I know I can’t think of a better way to celebrate the holiday than by checking it out! And, for more information about Positive Exposure and its undertakings, you can visit their website.

As their website puts it, “The Community Action Partnership is the nonprofit, national membership organization representing the interests of the 1,100 Community Action Agencies (CAAs) across the country that annually help 17 million low-income Americans achieve economic security.” They accomplish this through their CAAs, which offer those in need opportunities to receive job training, housing, food, energy assistance, financial training, daycare and much more, all with the goal of “making America a better place to live.”

Don Mathis

I recently had the opportunity to sit down with our January Man of the Month Don Mathis, the President & CEO of CAP and ask him about some of the issues and campaigns CAP is focusing on in 2011 – particularly those with a health care angle. This is what he had to say.

Question (Q): As you know, our blog focuses primarily on health care issues. So, I was wondering, what is CAP doing to combat the nutrition disparity that exists between the general population and the low-income population?

Don Mathis (DM): CAP is working with the United States Department of Agriculture (USDA) and the Department of Health and Human Services (HHS) to promote their programs to the approximately 1,100 CAAs across the country. These programs deal with all sorts of issues – everything from food deserts (defined by the USDA as an area with limited access to affordable and nutritious food, particularly such an area composed predominantly of lower income neighborhoods and communities) to summer feeding (for students who, during the school year, receive reduced or free lunches) to the ever-popular fight against childhood obesity.

We are focused on combatting the food desert problem especially. The issue of food deserts has given way to President Obama’s Healthy Foods Initiative, which you may have heard about. Basically, the idea is that we can promote economic development act and farms/farmer coalitions while simultaneously getting rid of food deserts by getting healthy food into areas without it. There is actually a lot of interest in this from all across the board. How it works is we identify areas where food deserts exist – especially areas where it seems like stores are hesitant to open, for whatever reason – and then get federal partners, venture capitalists, co-ops, etc. together to take the risk and open the store. We supplement this with programs that aim at teaching the community to make better choices. The program is in its early phases, but we have already seen a lot of success around the country.

Q: I know you mentioned childhood obesity too – I understand that the Partnership is involved in First Lady Michelle Obama’s childhood obesity initiative. Can you provide some more details about your role in the campaign?

DM: This was another exciting experience for all of us here at CAP. We actually were able to attend Michelle Obama’s “Let’s Move” campaign kickoff ceremonies, and since then, we have been working to educate people about the dangers of childhood obesity and measures people can take to prevent it. We now have fact sheets and other information about obesity and exercise featured in our CAP monthly newsletters and we have been encouraging our CAAs to distribute additional information and notices to their participants. Also, in the works for 2011 – we put together a presentations with the Cal Ripken Foundation that centers around exercise and sports as a means of obesity prevention so we are currently in the process of trying to get that funded.

Beyond the First Lady’s campaign, our CAAs take ample measure to provide participants – especially children – with healthy food options. Many even operate their own feeding programs. In San Bernadino County, CA, an area approximately the size of Vermont, we have a whopping 900 feeding sites that provide not only food but also information about nutrition and obesity prevention.

Note: Don Mathis participated in the Disruptive Women Breakfast on childhood obesity in May 2010.

Q: As we were discussing before, many people are finding themselves in need of what social services provide for the first time, but navigating the various services/programs can be confusing. What health and nutrition programs have you seen work well for the population your organization serves and how can people find out more about the programs available?

DM: Definitely the program that stands out to me is food stamps (now known as the Supplemental Nutrition Assistance Program, or SNAP and disseminated via debit card), which today includes both the food provision and an education component. This education component aims at helping encourage people to make smart food decisions and healthy choices. There is even a pilot program in place called Healthy Incentives offering participants incentives to purchase fruits, vegetables and other “healthful foods.”

Not only is the food stamps/SNAP program probably the best known of any available social service, but it is one of the most widely used. In fact, one in seven Americans receives food stamps. What is more, four out of five African American children will receive food stamps before the age of 18.

Another lesser known program we have also seen a lot of success with is the WIC (Women, Infants, Children program) for pregnant women, new mothers and mothers. It provides supplemental foods, healthcare referrals and nutrition education for low-income pregnant, breastfeeding and non-breastfeeding postpartum women, and to infants and children up to the age of 5 found to be at nutritional risk. Our CAAs work to enroll qualifying people in all of these programs (SNAP, WIC, etc). In fact, our Centers have the ability to help people enroll in lots of different programs, including Head Start and energy assistance — programs that many may never realize were available otherwise. In fact, CAP partners with over 40 separate organizations, federal, state and local programs.

Q: Shifting gears, obviously one thing that the Affordable Care Act (passed in March 2010 and repealed in the House last week) had a pretty significant impact on was Medicare/Medicaid. Generally, what impact do you think health insurance reform will have on low-income individuals and families like those that CAP serves?

DM: Well, one thing to keep in mind is the budget crisis surrounding the Affordable Care Act, but we’ll save that conversation for once we see what happens in the House/with the repeal.

Obviously, as we all saw last week, people of a certain political persuasion want to gut the bill. One section especially that they mention wanting to eliminate is the prevention section, which allocates $800 million towards preventive care. Of course, preventive care actually saves people a lot of money in the long run, because it prevents ER trips, missed days of school/work, etc. but opponents call it [prevention fund] a slush fund and have already established their intention to gut it [whether through the repeal or a supplementary bill]. CAP plans to see how they can get low-income populations involved in prevention fund, as well as, of course, CHIP (Children’s Health Insurance Program) and Medicare/Medicaid. As to what will actually happen, that remains to be seen.

Q: Don’t we all feel that way? Haha. Well just one final question then – all of us Disruptive Women are always trying to pay attention to the issues that aren’t getting much attention (the better to disrupt with, my dear). Are there issues around health or nutrition that are often overlooked when it comes to disadvantaged communities? Is there a specific issue you would like to see get more attention?

DM: The biggest challenge is and continues to be the issue of accessibility. Obviously with a national organization like CAP, we serve many different populations, all of which face different issues and different challenges. I always use the example of Camden, New Jersey, which does not have a supermarket, Laundromat or movie theater. Their challenges are different from a rural community that perhaps has a grocery store, but no doctor or hospital within 50 miles. Census data indicates that poverty is moving into the suburbs, and that too will create its own unique populations, cultures and challenges. All of these problems are ongoing and not likely to fade within our lifetimes, but one thing I really hope is that in 2011, we can make significant progress in expanding the healthy food network so that low income neighborhoods and communities gain access to healthy food. Sure, it’s only a start, but it’s a good one.

By Hope Ditto. No matter where you look in October – from the football field to the supermarket, the National Mall to the shopping mall – everyone’s attention is on Breast Cancer Awareness. Of course, considering that October is National Breast Cancer Awareness Month, this is hardly surprising, and in fact it is commendable how much attention from people of all genders, races and socioeconomic classes take pause for one month a year to recognize and redirect energy towards combating breast cancer. But, the Disruptive Women, focused though we are on women’s health issues, thought that the ta-tas had gotten more than their share of the limelight and that it was time to give some attention to a certain OTHER body part.

So, rather than choose someone particularly active in breast cancer awareness or research to be our October Man of the Month (MotM), we took our choice south – literally – and selected seven-time Tour De France champion and relentless TESTICULAR cancer advocate Lance Armstrong for this highly coveted honor.

Why Armstrong? Because not only has he made a steadfast commitment to a health issue affecting a significant portion of the population, but because he also embodies so many qualities we look for in a MotM. He has, against all odds, succeeded in his chosen area of expertise, he has been and continues to be his own best health advocate and he uses his professional fame to direct attention towards a significant medical issue facing the wider populace.

Armstrong, who was diagnosed with testicular cancer in 1996, did not take his diagnosis lying down. Not only did he and his doctor work to devise an alternative and ultimately highly successful treatment plan for his advanced cancer, but he also almost immediately used his fame as a professional athlete to the advantage of cancer patients everywhere. Seeking a greater platform through which to reach people, Armstrong established the Lance Armstrong Foundation (LAF) in 1997 with the mission of inspiring and empowering cancer sufferers and their families. Shortly thereafter, the Foundation launched the highly successful LIVESTRONG yellow band campaign.

Since its establishment, LAF has continued to achieve and surpass goals, to the benefit of survivors of all types of cancer around the world. Not only has LAF continued to advocate and to raise money, but the Foundation has, every year, taken new and greater steps to gain awareness and monetary support for cancer research initiatives – including hosting the first ever LIVESTRONG Presidential Cancer Forum in 2008 and the LIVESTRONG Global Cancer Summit in 2009.

Armstrong, who has now been in remission for over a decade, continues to defy the odds on the racetrack and off it. He continues to be active in the professional cycle racing world, as well as taking LIVESTRONG global and serving on the President’s Cancer Panel. Anyone, healthy or otherwise, would be lucky to achieve even a fraction of what Armstrong has in his life, and for the fact alone that he survived it while suffering from testicular cancer, we are pleased to call him our October Man of the Month.

For a man in his thirties, Duff Goldman has no deficit of accomplishments. Actually, he has accomplished a lot even for twice his 35 years (36 on December 17^th). Besides being a reality TV star, a successful small business owner and a world-class cake maker, Goldman holds a Guinness World Record for baking the world’s largest cupcake. But none of this is what inspired the Disruptive Women in Health Care blog to name Duff the Man of the Month. Nor was it because December is his birthday month.

Sure, we marvel at Duff’s creations on his hit Food Network show, Ace of Cakes every Tuesday night. And we admire his business prowess, and the brand that he created with Charm City Cakes. We even admit that we find his “bad boy” physique – complete with tattoos – charming (and more than a little intriguing). But what inspired us to make Duff our December Man of the Month wasn’t any of these things – it was his love of art and music.

“There are lots of things in life that we don’t understand,” Duff said recently in an interview with Disruptive Women in Health Care founder Robin Strongin, “but chords make us feel emotion. We gain empowerment from their sounds.”

Right then – that’s when we knew Duff just had to be our December Man of the Month – because his feelings on the role of art and music in healing mirror those we will be showcasing in this evening’s Disruptive Women in Health Care Holiday Reception — Art & Music Therapy: A Demonstration of Healing. And Duff said a lot of the things we were thinking to this effect a lot more eloquently than we did!

“Our natural inclination is to create harmony,” Duff commented, and that is exactly what he does in all aspects of his life. In his spare time (which he assures us he has, despite how it appears in the show), Duff plays bass in the indie instrumental band “so I had to?” and sculpts (items that are NOT edible).

As Duff went on to explain, “The power of any smile or laughter is fantastic.” He said that this is one of the things that inspires him to create – cakes, music, art, whatever. “We try to lift everybody up.” But he was careful to point out – “don’t overlook the power of sadness and failure.” You can learn as much (or more) from your struggles and woes as you can from your victories and joys.

Duff also pointed out the power of art and music in giving a voice to the voiceless and in shedding a spotlight on issues of importance. An issue that is important to him is combating animal abuse. As an ardent support of the Maryland Society for the Prevention of Cruelty to Animals (SPCA), Duff appears and makes one of his famous cakes every year for the March for the Animals.

Tonight’s Disruptive Women Holiday Reception highlights the power of art and music in healing and will feature an original Duff Goldman cake creation (cake pictured below)! The event will be held at The Kreeger Museum  here in DC and include the live music, the cake unveiling and more!

Jack Lewin, MD

Jack Lewin, MD has been the Chief Executive Officer of the American College of Cardiology (ACC) since November 2006. Under Dr. Lewin’s leadership, ACC has continued to build upon its standing as a national leader in advocacy, with a particular focus on reforming Medicare, Medicaid, and the financing and delivery of quality health care. We had the opportunity to ask Dr. Lewin about his thoughts on innovation in the medical sector; below are his responses.

Q: The American College of Cardiology’s mission is transforming cardiovascular care and improving heart health through continuous quality improvement, patient-centered care, payment innovation and professionalism. How big a role does innovation play in ACC achieving this mission?

Innovation is necessary to reduce morbidity and mortality – we have seen a 30 percent reduction in cardiovascular mortality nationally within the past 10 years because of new therapies, prevention, systems of care, and innovation.  As the US works towards a decrease in health care costs and works toward promoting sustainability, we have to prevent falling into a trap of slowing the pace of innovation.  The big secret in US health care is that a systematic increase in quality is the way to reduce costs by reducing admissions, readmissions, and complications, and by improving outcomes. Without innovation we will see the increase in people with obesity and diabetes that require expensive treatments we can’t afford. We have to keep moving to create new and better therapies to arrest chronic cardiovascular disease, more effectively treat acute crises, and prevent diseases through earlier diagnosis. 

Q: In a recent blog you said, “I was a speaker last week in another roundtable on “innovation,” something our nation is trashing as we pursue perfection in patient safety.” Can you elaborate on the relationship between innovation and patient safety? Is there anything that can be done to alleviate some of the concerns surrounding medical innovation so that it can flourish?

Today’s regulatory agencies in the US have become more conservative than in the EU, UK, and elsewhere in the world.  Unfortunately this is forcing the US research and biotech industries offshore.  From the point of view of CMS and the federal government, the focus is so fixed on cost containment that the agencies don’t think about how to jump beyond the problem of rising costs by reducing the need for outdated therapies and diagnostic devices and replacing them with better ones that essentially reduce morbidity and decrease overall costs.  Investing in comparative effectiveness research is investing in innovation, but not if it turns into a strategy of purely cost containment in an ever-narrowing context. 

The FDA has become obsessed with concerns around individual patient safety, which is admirable; but if the quest for innovation requires a zero tolerance for adverse events, we will be scientifically paralyzed. Patient safety certainly shouldn’t be deemphasized, but we have tools such as registries that can increase post market surveillance and give new therapies the opportunity to safely reach patients-in-need sooner, and keep the research infrastructure and culture of innovation alive in the US. The “TAVI,” transcatheter aortic valve intervention, is a good example. This percutaneous valve replacement technology was developed in the US, but has been implemented in the UK, Europe, Canada and Asia because we are too risk adverse to bring this potentially lifesaving technology to elderly who are not candidates for open chest surgery. This is taking patient safety to an extreme that is stifling innovation and needed medical and life saving progress.

Q: What are some promising innovations in the field of cardiology?

Promising innovations include the TAVI percutaneous valve replacements as well as new devices that provide ventricular assistance and support, and new short-term uses for ventricular assist devices.  Cardiovascular genetics and cardiovascular cell therapies are also an expanding frontier.  There are new therapies on the horizon such as warfarin alternatives for safer anticoagulation, along with better pharmacologic ways of preventing and treating coronary artery disease, heart failure, arrhythmias, diabetes and hypertension.

Q: What role do you think health reform will play in the world of medical innovation?

The future of health reform is uncertain.  There is a need to better promote current evidence at the point of care. A health care payment model that incentivizes quality at an affordable cost is an essential part of the agenda. This health care model should provide incentives to promote comparative effectiveness research to answer the many clinical questions and should promote health IT and clinical registries to help us more effectively track how we are doing with current and emerging therapies. These kinds of goals tend to be what I call “faith-based” provisions in the Affordable Care Act. We need to design systems to make these goals implementable!

Q: How important is technology in innovation? Do you know of any examples worth sharing?

Technology has become a key part of medical innovation.  Electronic health records (EHRs) will make a huge difference when fully implemented.  Other notable innovations include home monitoring devices and telemedicine outreach to rural communities and places with limited access. Clinical decision support systems are also needed, such as ACC’s PINNACLE registry, which allows evidence to become part of what is routinely possible and expected at the point of care, with electronic feedback systems to constantly track comparative quality of care, appropriateness of care, outcomes and patient satisfaction. This is the way to improve quality, lower costs, address disparities, and create a learning health care system.

Q: It seems innovation is disruptive; is the disruption it causes positive or negative in your opinion?

The disruption of innovators can be both positive and negative. Anytime there is rapid progress there is the risk that valuable elements of the present can be left behind.  Disruptive innovators challenge the status quo, which is critically important.  The US could be headed towards mediocrity if we choose to drive into the future with our eyes on the review mirror. We need to embrace change and seek a better future through innovation, while making sure we retain what works in the past and present of health care as we speed into the future.

Q: What are some words of wisdom to follow when working on an innovation?

Go for it! You won’t always succeed, but so what?  If you have an idea or see an opportunity for change in an area where there is a void, just go for it.

Q: Anything else you would like to say on the topic of innovation in health care?

Let’s get on with embracing change. America has the best health care system in the world, and it’s time to fix it! We waste a lot of time bragging about the very positive aspects of our health care, while we have de-emphasized the fact that we are spending two times as much per capita as other developed nations, without an acceptable return on investment.

I believe we have the best-trained work force and the best health care technology in the world.  When it’s at its best, the US health care is the best.  Unfortunately, all too often we are not at our best.  There are too many unanswered clinical questions in health care that plague us, and there are gaps in quality that need to be addressed.  So let’s get on with discovering, developing, and implementing the next generation of exciting therapeutics and devices to continue to reduce morbidity and mortality, disparities, and gaps in patient safety, while we increase prevention, team-based systems of care, outcomes and heart health.

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.”

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.”

Orphan Diseases – Bellwether of Health Care

“The only people interested in rare diseases are those who have them, and that’s not a lot,” an editor once told me when rejecting my proposal for a book on orphan diseases.

In reality, nearly thirty million Americans – one in ten – suffer from some 7,000 rare diseases, making them collectively very common indeed.  Though they differ wildly in their causes and manifestations, they share many characteristics in terms of the uncertainty, isolation, and costs imposed upon sufferers and their families, the challenges they pose for our health care system and sense of social responsibility, and their potential value to medical research.

In the United States, orphan diseases were defined by the Orphan Drug Act of 1983 as those that affect fewer than 200,000 people domestically.  This landmark legislation offered incentives – tax credits, a period of market exclusivity independent of patent protection, research grants – for manufacturers to develop clinically valuable treatments that would not be economically viable in the normal pharmaceutical market.  Previously there had been tragic instances of known, potentially useful therapeutics never taken to market, or others of already proven effectiveness that were withdrawn, because they did not meet a drug company’s threshold of profitability.  The definition encompasses some familiar disorders, such as cystic fibrosis, muscular dystrophy, hemophilia, Huntingdon’s Disease, and Crohn’s disease, along with thousands of much rarer conditions, including fibrodysplasia ossificans progressive (FOP), Jumping Frenchmen of Maine, and Sakati Syndrome, or acrocephalopolysyndactyly type III, which for many years was represented by a single patient in Saudi Arabia.

In less than thirty years since passage of the Act, more than 300 orphan drugs have been approved for market.  Some are produced by large pharmaceutical companies.  The biotechnology industry also benefited tremendously from the orphan drug market and its incentives.  In addition, as one pharmaceutical executive told me, big drug companies may need billion dollar drugs to support not only R&D but also massive corporate infrastructures and the sales and marketing machinery, but a small company aiming at a well-defined population, with a small number of specialized physicians and facilities, patient advocacy organizations, and unusually motivated patients, can get by quite nicely on mere tens of millions of dollars in revenues.

Research on orphan diseases is often unusually productive.  William Harvey, who discovered the circulation of blood, wrote in 1657 that nowhere does nature more openly “display her secret mysteries than in cases where she shows traces of her workings apart from the beaten path; nor is there any better way to advance the proper practice of medicine than to give our minds to the discovery of the usual law of Nature by careful investigation of cases of rare forms of disease.”  Sigmund Freud more generally stated in the New Introductory Lectures on Psychoanalysis that studying abnormal behavior was valuable because the broken structures of mental patients’ minds were as revealing as the fracture planes of a shattered crystal, which yielded clues to otherwise invisible molecular structures.  Rare diseases, often resulting from a single gene mutation or flaw in one step of a metabolic pathway or developmental process, may reveal stark outlines of underlying mechanisms difficult to tease out of complex, multifactorial diseases like hypertension, diabetes, obesity, or cancer.

Clues provided by rare diseases like Fragile X syndrome, Gaucher’s disease, and tuberous sclerosis complex provide insights into the mechanisms of more complex neurological disorders; WAGR and Chanarin-Dorfman syndromes give clues on obesity and fat metabolism; Schnyder crystalline corneal dystrophy helps elucidate cholesterol metabolism defects that may be implicated in heart attack and stroke; alpha-1-antitrypsin deficiency causes emphysema at an early age, allowing the lung condition to be studied separately from the effects of smoking and other factors in later life; and the study of progeria, a tragic premature aging disease with only a few dozen patients living truncated lives worldwide, sheds light on the normal process of aging.

Research on other rare disorders has already yielded important clinical and pharmaceutical discoveries.  The study of kuru, a rare neurodegenerative disorder found among members of a New Guinea tribe that engaged in ritualistic cannibalism, led Stanley Prusiner to his Nobel Prize-winning identification of prions.  Studies of the rare condition homozygous familiar hypercholesterolemia led to another Nobel Prize-winning discovery and the development of the important statin family of drugs.  A few hundred people suffer from the adenosine deaminase deficiency form of severe combined immunodeficiency disease – a variant of “bubble boy disease” – but the treatment strategy developed for it, of decorating therapeutic enzymes with protective polyethylene glycol (PEG) polymer chains, inaugurated a whole family of PEGylated drugs now used for the effective treatment of many more common diseases.

One unfortunate omission in the Orphan Drug Act was the field of medical devices, which were not given the same incentives as pharmaceuticals.  FDA’s device regulations do provide for what are called “custom devices” – variants of a commercially marketed device that are prescribed for an individual patient, like prosthetics or dental implants.  In the early 1980s, Cook Medical, an Indiana device company that manufactured a bladder stent for ureteral obstructions, custom produced a diminutive version for use in fetuses.  Cook sold this device at cost, as it was an effective way to treat an otherwise fatal condition affecting 200 fetuses each year.  When the number reached 680, FDA decided that the stents were no longer custom devices, but manufactured products, whether sold at a profit or not.  Cook successfully lobbied for new legislation, and the Safe Medical Devices Act of 1990 included provisions for a Humanitarian Device Exemption.  Alas, Cook won the battle but lost the war, because the exemption applies only for conditions affecting fewer than 4,000 Americans per year, explicitly bars manufacturers from making any profit, and provides incentives too paltry to encourage and facilitate the sort of robust R&D projects seen in the orphan drug world.

In addition to the research and product development benefits, orphan diseases present models of health care collaboration and service delivery that, though perhaps not fully scalable to more common diseases, inspire one to think of more efficient and effective approaches, particularly in an era of increasing specialization and of finer diagnostic differentiation among subtypes of medical conditions.  My own first exposure to an orphan disease, more than twenty years ago, came through a chance meeting with Dr. Frederick Kaplan of the University of Pennsylvania, an expert on FOP, a rare genetic bone disease in which muscles, tendons, and ligaments are progressively transformed into bone.  What struck me most – after the tragic oddity of the disease – was the extraordinarily close and productive collaboration between FOP clinicians, basic researchers (including Drosophila geneticists studying homologous gene defects in a boneless creature), and the patient population, all working together with a sense of respect and combined purpose that I had never seen before.  These three distinct populations directly informed and powerfully inspired one another with their respective understanding of the disease, and all of them benefited from the experience.

Because of the level of communication within rare disease communities, and with companies developing diagnostics or therapeutics for diseases where such candidates exist – there was tremendous efficiency and economy in the sharing and evaluation of knowledge.  And if, in the end, a treatment was developed, the companies’ ability to market products directly to a well-defined physician and patient population enabled everyone to benefit, eliminating the massive waste of buckshot marketing.

Perhaps nowhere are some of the most critical issues in health care and its costs thrown into harsher relief than with orphan diseases.  One might justifiably say that our approach to rare diseases is a bellwether of how our society will meet health challenges and deal with vulnerable populations generally.  A utilitarian or egalitarian approach recommends policies that yield the greatest good to the greatest number, not the disproportionate allocation of more money to patients whose conditions are rare or severe.  At some point benevolence towards heart-rendingly tragic cases may compromise the well-being of many.  On the other hand, a belief in equal rights suggests that we should, to the extent possible, help all people to become whole, even the blameless victims of random genetic mutations, and provide medical care adequate and appropriate to their conditions whether they are commonplace or not.

In a time of health care reform, we all are conscious that medical care is expensive, that we need to control costs, reduce errors and inefficiencies, and foster a system based on evidence rather than on marketing.  But “expensive” has meaning only in the context of what we are trying to do.  Inevitably we will develop better methods of screening for potential problems, targeting drugs at those who respond best to them, customizing therapies, and monitoring responses.  This costs.  But if greater up-front costs in approaches to smaller and smaller, more orphan-like populations lead to longer term savings or improved patient outcomes, the equation shifts.  What are we trying to do?  How important is health?  And what is our moral responsibility as a society, as humans, to care for the orphans or for others with more common serious ailments and infirmities who are also, ultimately, alone and distressed in their suffering?

For further information on orphan diseases and drugs, see:

• Thomas Maeder “A Few Hundred People Turned to Bone,” The Atlantic Monthly

• FDA’s Office of Orphan Product Development

• Humanitarian Device Exemptions

• The NIH Office of Rare Diseases Research

• The National Organization for Rare Disorders

After watching his parents and six siblings die from undiagnosed, untreated diseases, Peter Kithene vowed not to let that happen to other families. “I want to give kids their parents and give kids their lives,” he tells Disruptive Women.

While a college student at the University of Washington, Peter opened the first Mama Maria clinic in his home village in Kenya. He now has two clinics, three small out posts and just finished a business plan to open a third.

He wants all people in Kenya to have accessible health care.

Disruptive Women is proud to name Peter our April man-of-the-month.

He took a few minutes to speak with Disruptive Women’s Wendy Grossman.

Q: I read that by the time you were 12 — both your parents and six of your siblings had died from undiagnosed diseases? Is that correct?
A: Yes.

Q: What happened?
A: They got sick. At that time I didn’t know a lot. I was a kid myself. The kids got sick and died when they were young.

What I saw, what stayed with me until today, was my brother (who is still alive) almost died. He got very sick and had meningitis. Nobody knew what was going on. There were no laboratories to take him. When his illness got very serious, we traveled very far with him. And they said, ‘This kid has two hours to live. If we don’t get him to the hospital now, he’ll die.” They had an ambulance 15 miles away, and they drove across the border into Tanzania to a hospital there. And they treated him and treated the meningitis. Then he ended up losing his hearing and speech — he became deaf. This was a really talkative kid.

I just saw that, he could have died. If there wasn’t an ambulance and a reliable place to take him, and a hospital, he wouldn’t have lived. He lived. And after I opened the clinic, I saw kids coming in with the same illness, the meningitis. But we are able to treat it, and they got to go home and they don’t become deaf like my brother.

And lives are saved.

The other ones who died I don’t know what they died from. And then my parents also died. They really wanted to go to hospital. They needed the care, but there was no place to take them. Or the places they could go were just too expensive. Nobody could afford that.

Q: Is it just you and your brother now? Or do you have other siblings?
A: Me and my two brothers and one sister.

Q: Wow that’s a lot of kids your parents had. Tell me, why did you start the clinic Mama Maria? I read that your work is, in a way, avenging their deaths.
A: Avenging their death. No, I don’t think it’s avenging. It’s just giving life opportunities to people. I got a chance. I had the dream after my parents passed on — my dream as a kid was to get a place people could go to when they’re sick and get treated.

With that dream in mind, I worked so hard. Every step I made along my way from the village and everywhere I went was in doing that. I was volunteering as a kid in clinics and visiting with the sick in their homes.

It’s a dream I had at a very early age.

Q: Did you want to be a doctor?
A: Yeah, yeah, when I was growing up I thought if I could treat people, that would be great. But one thing I really wanted — my Uncle keeps telling me — you say things as a kid that you don’t remember — but my Uncle keeps telling me, you really wanted an ambulance and a hospital.

A place to prevent what I saw in my family. A place to give kids their parents. Being an orphan at that time — I don’t consider myself an orphan now because I’m a grown up — but being what I was, being left to just figure out where life takes you. I want to give kids their parents and to give kids their lives.

It could be translated as avenging my parents.

Q: So no one in your village of Muhuru Bay had any medical training?
A: At the time, when we were growing up, there was no care. There was no care. It was, like many rural villages, and many rural communities…. The suffering that people go through in those communities and places like where I grew up — healthcare is not there. My goal, my dream, is to keep planting them and plant them with a really strong system and inspire people and get people engaged and create a place that people can go.

Q: So how many clinics have you opened now?
A: I have two clinics. The main one in Muhuru. And I have three out post clinics on Lake Victoria islands. And then I’m just finishing up working on a business plan to scale it up and become a voice, become a stakeholder in healthcare in Kenya and the region.

Q: So you’re doing this from Seattle?
A: I’m doing this both from Seattle and Nairobi. My offices are in Nairobi, Kenya and I have a small office in Seattle. As the work continues I travel to Kenya most of the time.

Q: How much of the year are you in Kenya?
A: I would say maybe five months.

Q: So what do you do when you’re in Seattle?
A: I attend talks, I fundraise, my wife and son live in Seattle. We live in Seattle. My family is here — it’s home. I work, I engage people, I connect with people.

Q: So what changed you from wanting to be a doctor?
A: I started the clinic when I was in college. It took most of my time. It was like, ‘Let me learn how to manage it.’ I thought I would go to grad school and do healthcare management. When I started that, my country, Kenya, went into trouble.

My country went into flames. And I could see that the banks across the country would open. There could be riots, and then five minutes later the banks open. But the first things to close were the healthcare centers and healthcare facilities. It was such a time of need. The first place to close was clinics and hospitals.

I just felt like, ‘Oh wow. There’s work to do here.’ I didn’t close. I just want to give it my time and figure out how I can create something to withstand the challenges and the hard times.

So then I decided to give it my lifetime and dedicate all my time to it.

Q: You were a college student when you opened Mama Maria — how did you do it while you were in school?
A: I fundraised. I talked with people. I told people what we needed to do. And people gave me money and I used the money to start a facility in 2005. And I just kept building on it.

Q: Why did you name it Mama Maria?
A: I needed a name that was very easy in Africa and could be planted anywhere in the world. And I wanted to give something that sounded very welcoming and maternal. I know that’s confusing because it sounds religious — which I’m not. I’m very secular, and my clinics are not based on any religion. But it’s a name that is very easy for anybody.

Q: Gotcha. What’s next for you and the clinics?
A: A robust healthcare system in Kenya. I’m finishing up a business plan with a very, very talented consultancy team. We are finishing a plan to roll out a system that will impact the entire country with primary health care — accessible, primary health care.

That’s what I’m working on. And providing opportunities for people in Kenya to get jobs through healthcare.

Q: How many people do you treat each year?
A: In a year, 14,000.

Q: How many people have you treated total?
A: We’ve treated over 50,000.

Q: I read that you’re recognized on the streets in Nairobi and people call you Daktori? Is that true?
A: You read a lot. People are excited. It’s so exciting.

It’s exciting for the country to see somebody doing what I’m trying to do. Whenever I’m there, when I have the time, the radio stations and the national TV stations want to interview me. Then people see and they get excited.

When I’m in Nairobi, people honk. And they say, ‘Are you Daktori Peter?’ Daktori is doctor. ‘Are you Dr. Peter?’ I say, ‘No. I’m just somebody doing stuff.’ A lot of people know my name but they haven’t met me, but when they see my face, they recognize my face.

Q: Why is your work so exciting for the people?

A: Just the need. People are so hopeless. The different challenges there. The lack of healthcare and the existence of buildings with no medicine. To find someone who wants to tackle that and have medicine…

People in Kenya don’t do that. People do stuff for their tribes.

The only thing I can do is to look at my tribe where I was born and stop there. But to get somebody who has an idea of Kenya and planting clinics in the country — it’s exciting. That part of it is very exciting. That’s what excites people. And then to know that there’s somebody who cares for the sick across the country — when nobody does that — is just really exciting.

Q: What are you mostly treating at your clinics?
A: I was actually working on that, here. We are treating a lot of malaria, and amoebas, and a lot of dysentery. I’m seeing about 40 different diseases that a doctor wrote out for me.

Now, I’m treating HIV. I didn’t treat HIV for a while, but now the government accredited the facility to treat HIV and TB. And the complications that come with that like herpes zoster. We also do maternity and delivery and perinatal care.

Those aren’t diseases — but we treat a lot of malaria, dysentery and typhoid.

Q: Wow, typhoid you don’t hear that a lot anymore. What else do you think is important for people to know about your organization?
A: I want people to be inspired by my organization. I want people to realize that these are things that can be done if we just give ourselves to do them. When we do them, the impact is amazing.

We need support. We need money. We need people’s volunteer time. I’m working as hard as possible to make them sustainable. I don’t give anything for free and that’s a challenge. I try to charge to make it as sustainable as possible. That’s one thing people need to know, I’m doing this — but, I’m using the local economy. I’m taking advantage of the economy that goes on in the villages and figuring out how to make people invest in their lives and in their healthcare. Instead of giving anything for free, I charge a small fee to help sustain.

Q: So the clinics aren’t free?
A: Technically. A child pays $3 for the entire treatment — that covers all laboratory work and medicine and consultation. And adults pay $5 for their entire thing.

Q: Well it’s a nominal payment.
A: Yeah. It’s a fee put there to make people invest. I want people to know that I don’t give things for free. It’s helping people that way. I get in trouble when I get free mosquito nets. — I can’t give them for free. I need to charge 50 cents. People say, ‘You can’t charge.’ But that’s how I work.

Q: You want to teach people healthcare is important to invest in?.
A: And when we run out of medicine we have money to buy more. If you give things for free, you can’t even buy more medicine when you run out.

It’s giving people their dignity. And having them invest — and making them proud of who they are.

Q: But still keeping it attainable.
A: Exactly. Nobody is ever turned away if they don’t have the money. They come with their bicycle. If they don’t have any money, they can leave the bike. They go home, and then two days later, when they get a few shillings, they can come back and get their bike.

Nobody is ever turned away. The poorest of the poor get free medicine. The people that don’t have anybody to help them, we take care of them and we sponsor their medication. We give them ambulance transportation to the hospital.

We have two orphans and there’s nobody to take care of them and they have chronic illnesses. It’s our duty to make sure the kids are taken care of.

If you want to help, please visit: www.mamamaria.org.

Disruptive Women welcomes nationally recognized Intensive Care Specialist Dr. Brian Rosenfeld, as our March 2010 Man of the Month.

Dr. Rosenfeld is an Intensive Care Specialist (intensivist) who pioneered and developed the concept of remote intensive care unit management. He co-founded VISICU Inc. in 1998 with his partner Michael Breslow and served as its Executive Vice-President and Chief Medical Officer. The company had a successful IPO in 2006 and then was acquired by Royal Philips Electronics in 2008. He is currently responsible for devising the strategic direction of tele-health within Philips Patient Monitoring and Informatics.  Prior to founding VISICU, Dr. Rosenfeld was an Associate Professor of Anesthesiology and Critical Care Medicine, Medicine and Surgery at the Johns Hopkins University School of Medicine.  While at Hopkins, he was Director of two critical care units and received the Shannon Award from the National Institutes of Health.

Disruptive Women’s Robin Strongin recently had the opportunity to talk with Dr. Rosenfeld.  A few minutes into their conversation, says Robin, one thing becomes very clear:  Dr. Rosenfeld’s absolute passion for real-time, proactive, quality patient care.  In other words, telehealth—the technology behind Philips-VISICU.

As a cofounder of VISICU, What triggered the idea?

The idea was the easy part.  Developing a company was the hard part.  Before we started what was essentially a software company, I was an attending physician at Johns Hopkins Hospital.  Ironically, I almost had my privileges removed by my ICU colleagues because I initially refused to use the new EMR (electronic medical record) that had just been installed in the surgical ICU.  In the end, though, I recognized the power of information technology as it relates to patient care, high quality patient care.

My epiphany came as I realized that the current trajectory of baby boomers, and their need for ICU level care, was quickly overwhelming an already tenuous system.  ICUs account for 50% of all hospital deaths and approximately 30% of hospital costs; and many of them do not even have an intensivist involved in care delivery. There simply weren’t enough intensivists to meet the needs of this growing demographic group.

But there was a solution:  by utilizing technology and redesigned workflow to leverage the knowledge of intensivists in a way that reached exponentially greater numbers of patients.  By installing two-way audio/video connections and providing the appropriate information technology necessary to remotely monitor and intervene on patients, these highly trained physicians and critical care nurses could be on hand to provide care to many more patients in multiple sites across any geography. Virtually. Approximately 10% of all adult ICU beds in the United States are now monitored and managed with this technology.

What are the benefits of remote monitoring as you see them?

By allowing computer intelligence to scan thousands of data elements on each patient and run these data through proprietary algorithms the system guides the intensivist and the entire health team to work smarter, not harder.  Think about it.  Nurses and physicians who are at the patient’s bedside, are not replaced by the remote critical care team, but have an additional set of eyes monitoring the vital signs, laboratory data, and changes even when the on site health professionals cannot be in the patient’s room.  Studies have shown that properly using this technology can significantly reduce mortality and length of stay, which translates into human and financial savings.

Before remote monitoring was available, nurses, particularly on the night shift who identified a problem with a patient, would literally have to track down a physician or their covering partner and wait to get a call back.  That was Stone Age medicine.  Today, we have physicians monitoring patients around-the-clock.  They can be in touch with the bedside health team in real-time.  Look, the ICU is a chaotic place 24 hours a day 7 days a week.  By harnessing the expertise of these intensivists (of which, by the way, there are only about 6500 in active practice across the country), many more patients benefit as do the on-site staff.

Are there other benefits for the hospital or health system investing in remote monitoring?

Actually, the community itself benefits.  Here’s what I mean.  In the Washington DC metro area, the INOVA health system has set up our remote eICU monitoring program that is staffed with INOVA intensivists and critical care nurses.  During a recent disaster planning exercise that took place across northern Virginia, the eICU Center, which is co-located with the Northern VA Disaster team headquarters was an integral component of that effort.  While INOVA made the investment, the entire community benefits.

I have to ask.  What impact do you expect to see from the recent health reform legislation?

Much of that remains to be seen.  That being said, I can tell you that the Obama administration has embraced tele-health and health information technology in an enormous way.  It is clear to me that the administration understands that you cannot keep adding people to the current system and not change the process of care.  What we are doing is a major step toward an improved health care delivery system for critically ill patients.

We are very pleased with the progress Philips-VISICU has made but recognize that we, and the country, have much more work ahead of us to cure our health system’s woes.

A personal trainer for 22 years, Morris White has both men and women – and even children as young as 12 – as clients. He helps them with basic fitness, sport-specific fitness and self defense. He also trains people with special needs, including those with disabilities and eating disorders, and those recovering from a stroke and heart attack.

In his own life, he is a power lifter and a practitioner of Kung Fu, Yoga, desert hiking and survival quests and sustainable healthy living. He is currently working on a fitness community site.

I can vouch for his impact. I’m now in my third year with him, with regular work outs at 6 AM. The benefits have been worth every trek to the gym in those before-dawn hours.

Morris, I’m pleased to have the chance to talk about fitness with you. It’s an important topic, but rarely addressed in this blogspace. How did you get started training?

There were three very influential men in my young life. It was the 1970’s. My Father was a pharmacist and successful businessman who took me to monthly Toast Masters meetings and had me working in the pharmacy on weekends. He taught me the importance of physical poise and presence. One of his business partners was a Physical Therapist who mentored me in anatomy and exercise, from him I learned about anatomy and body mechanics At about that same time, I was introduced to Kung Fu by my best friend’s Father who was a Master of the art.  Kung Fu combined all the earlier lessons and helped me to develop my personal philosophy on holistic personal training.

Those were the years of my greatest lessons.

I attended Temple University but my advisors could not grasp what I wanted to become and what I wanted to do with my life. The usual response was, “So, you want to teach phys ed?” No.

From there to the gymnasiums I went, working under different titles until personal training evolved and became popular.

 What about fitness and training makes it your passion? 22 years seems a long time.

Seeing my mother die at young age and my father debilitated primarily by an unhealthy lifestyle, has made me even more intent to give meaning to my existence by living and enjoying life to its fullest and helping others to do the same through fitness.  The bonus is that by helping others achieve their personal goals, I get to meet great people that, in turn, enrich my life through their collective experiences and wisdom.

How do you approach training?

My philosophy of training is:

• Safety first. You should never be harmed or injured in the course of training.

• Strict, proper form. The best form produces the best, most efficient results.

• Keep moving. A body in motion tends to stay in motion.

Follow those rules and you’ll keep at it, making progress. You’ll avoid injuries and won’t suffer any set-backs in your workouts. You’ll also see results and be able to have an increasingly better quality of life. Even if you’re already fit, you’ll see improvements.  As I like to say to my clients, “one foot in front of the other and you’ll get where you’re going,”

Oh, and one more thing, never imitate what you see others doing in the gym.  So many people do their exercises incorrectly. Others may do an exercise properly but their routine may not fit your desired goals.  Always consult a professional about a new exercise or routine.

Do you have any dramatic examples of client improvements?

I could tell lots of stories of women who come to prepare for their weddings. They’re motivated for sure. Believe it or not, they’ve bought dresses three sizes too small and now need to fit into them. Plus, the regular workouts really help them with the wedding-planning stress.

But the one client and story that really inspired me was a 280 lb sedentary banker who lost the weight and became a marathon runner.

As he became physical healthier, his self-confidence and self-esteem also improved.  This newfound self-respect gave him the strength to not only run a marathon but to walk right out of a less-than-supportive, troubled relationship and climb the corporate ladder to a promotion.

(Laughing) Of course, I cost him lots of money – he kept having to replace his wardrobe as his body changed.

Have you ever seen anyone who did not see an improvement in working out with a trainer?

Yes. This is teamwork and a few people were not ready to engage – in part because they were not honest about their goals and readiness to begin.

As you’ve seen in my approach, I don’t just bark orders and count. Training – at least with me – is not bootcamp. When we work out, we work as a team. We’re in constant communication. I’m asking how you feel and you’re telling me. If something hurts, I know immediately from what you say and sometimes from the way you act. That allows me to make subtle changes in the next exercise I choose.

You must be ready to be honest with yourself and you must be ready to trust your trainer to help you.

Yes, I see how easily you detect when I’m compensating, using a muscle other than the one you intended and not doing it right.

Busted!

You see, personal training is not just science, it is an art and it’s very much like life. Life always tosses us curveballs and I have to be aware and be able to read the pitch. Part of that comes from the communication between me and my client. It begins the moment you walk into the gym and asking “how are you feeling this morning.” That’s not just a greeting, it’s a diagnostic question. The answer and your body mechanics tell me what you need today.

I also ask you what you have planned for the day. If you’re at your desk writing, I’ll prepare your body for that. If you’re traveling, you’ll be ready for the flight.

I’ve benefited lots from working out with weights, but notice that it’s rare to see a woman on that side of the gym. What about other benefits you’ve seen in your women clients?

There are a variety of benefits and they’re not just physical. My clients have dropped dress sizes, lost weight, sleep better and have better balance, posture and reaction times. On the emotional side, they are more grounded and have greater self confidence. Some tell me they can “stand up for themselves” better in the workplace and in relationships.

Whatever you feel physically, you’ll feel emotionally.

How do you get women to that side of the gym?

Easy. I take them there when the time is appropriate, focusing on their needs and goals and instilling them with the confidence that they can do the best for themselves. I also point out how “not to” workout, using the examples of others there. This is not intended to criticize those people since you’ve seen me intervene and correct someone who may be risking injury, but to give her the confidence that she can do it right.

Finding you was pretty much luck. I met the gym owner at a party, one thing led to another and I ended up doing something I said I’d never do – meet with a trainer and make a commitment to train. That was more than 3 years ago. If someone reading this was contemplating finding a trainer, what advice would you give them?

Look within yourself first. By that, I mean you must decide exactly what is important to you. What is your present discomfort – physical or emotional? What is your goal? What motivates you?

When you explain that to a trainer, they should do more listening than talking. They should be able to repeat back to you the concerns and goals you stated in your initial meeting as well as to communicate the plan of action to get you started and keep you motivated.

What I find is that someone might begin with one motivation – like dropping a dress size – but then as they work out, they feel better. In some cases, people start feeling better than they have in years. At that point, their motivation shifts and they work out because it keeps them feeling great. Fitness becomes its own reward.

Finally, realize that your success requires that you and your trainer are a team. The two of you must perform like a team. The chemistry must be there.

Do you train older people?

Yes, it’s one of my specialties. There are lots of benefits of exercise, but most people are concerned about cognitive decline in aging and recent research demonstrates that fitness can stem cognitive declines, so this is important.

Older people’s bodies don’t recover as quickly as they once did and this is an area where young trainers can improve on their training techniques. It’s hard for a young trainer to empathize with an older person who needs more recovery time between workouts, or who needs special emphasis placed on balance.

I work with an older person much like an Occupational Therapist, in that I try to help them re-tune with their bodies.

Regardless of what some people may believe, older people can make great strides in training and see remarkable progress.

Sometimes I see couples in the gym and I know you train couples. If a man reading this wanted to get his special woman into gym, what should he do?

The only way it works for a couple is if they have a shared goal for the quality time they spend together, for example, if they have a goal to enjoy a particular sport or an active vacation that requires a set of specific physical skills or fitness. Otherwise, it just doesn’t work.

I’d never advise a man to try to train the woman in his life. The best thing he can do for her is to be sure she has a trainer who is a professional who knows how to train women.  He might coax her a bit, but it has to be her motivation and goals that bring her to the gym.  Trust me, I know this from experience. This statement has been approved by my wife.

Would you recommend that people start a fitness program without a trainer?

No. To build a healthy and solid fitness foundation, I always recommend starting with the guidance of a qualified trainer.

But I do want to stress the importance of actually getting going and starting to move.  Our bodies were designed with motion in mind and our minds were made to think. Our body wants to be used and we feel better when it is. A body in motion tends to stay in motion; a body at rest tends to stay at rest.

Get out there start to move. No excuses. Even a little bit better every day, one foot in front of the other gets you where you’re going. Exercise “gives back” more in time and value than it takes. Remember that the days you don’t want to go to the gym.

Some people think that training is exhausting or should hurt – no pain no gain.

Absolutely false. You need not kill yourself in the gym to see improvement in your quality of life.

Exertion is OK, pain is not.

I remember telling you that your time was wasted on people like me and that you should be training trainers. What keeps you helping folks like me?

I like being a mentor to the younger trainers in the gym and the camaraderie that comes with working with other trainers but what is most fulfilling to me is my role as a personal trainer.

I train individuals and count my blessings. I get to help improve the quality of life for others and in exchange, I get to meet many wonderful and different people – all of whom have enriched my life.

Any other advice for today’s readers?

Don’t overdo it. Do something every day. Safety first.

Listen to your body and learn the difference between when it’s in pain or danger and when it’s just whining.

Try a trainer, and don’t hesitate to change trainers. A good trainer will recommend other training venues – much as I recommended RowZone for you.

Morris, thanks. This has been fun, though I can’t say that about 5:30 treks to the gym in the driving rain! I’m hoping it inspires someone to join a gym or find a trainer and have a motivation, goal and training style discussion.

If it helps, I’ll be pleased!

Disruptive Women is thrilled to announce our January Man-of-the- Month, Greg Simon, Senior VP of Worldwide Policy at Pfizer.

Greg has served as a senior congressional staff member in both the House and the Senate, was the chief domestic policy advisor to Al Gore, and is past president of Faster Cures.

And now, Greg is Senior Vice President, Worldwide Policy, Pfizer Inc. As such, he leads a global team of professionals in a number of areas including (1) worldwide government policy (2) science policy (3) economic policy and research and (4) international policy.

At the moment, Disruptive Women was interested in his role advising Pfizer’s CEO about the company’s involvement in health care reform.

Greg shared a DVD of a recent speech he presented at a Pfizer legislative conference. In a 25-minute talk we saw why he’s so good at enacting legislative change — he exudes energy and enthusiasm—and he cares about patients. As a motivated, savvy policy and legislative expert, when he talks, you just feel like the right changes are going to be made. Soon.

“Healthcare reform should be about patients,” he told the audience.

His goal is to make sure that everyone not only has access to the doctor — but to the medication too. “It is not enough to say, ‘We make a great medicine,’ if no one takes it,” he instructs those in the audience. “How are we helping with insurance reform? We are helping by making drugs more affordable…. Nobody in America should go without our drugs — or any other company’s drugs — because they can’t afford it. And we have programs to ensure it. But, many people — far too many — don’t know about these programs.”

Still, he pointed out — if drugs were just given out free — “we wouldn’t save a dime on the health care dollar. We’d only save 8 cents,” he says. “And if they were free tomorrow, you wouldn’t have any the day after tomorrow.”

He encouraged everyone when they spoke to legislators to ask them one question: “How will this help patients? Because that’s the question we ask at Pfizer every single day,” he said. “The P in Pfizer is not silent. It stands for patients. And so do we.”

And that’s why we at Disruptive Women chose him as a Man of the Month.

If change doesn’t come right away — we know that this is a man who will keep fighting until it does.

“Every issue is a battle,” he says. And he’s ready to fight—for the patient.

This month, Disruptive Women welcomes Scott E. McFarland, Cleveland Clinic’s President of Wellness, as our Man of the Month.

Q.  For the first time ever, a nation’s top hospital is focusing its medical expertise on a consumer approach to wellness that is showing promise at helping people change their lives for the better, and you are leading this disruptive healthcare strategy for the Cleveland Clinic.  Why you?

A.  I have a unique blend of consumer marketing, healthcare, technology and legal experience.  I “get” consumers, and I “get” how an established brand can connect and extend its brand promise with new consumers without alienating its foundational constituencies.  Over my career, I have consistently delivered highly-respected results and outcomes with web-based risk-indexing healthcare services and business models that empower patients and consumers by encouraging self management.  Admittedly, I am more of an opportunist than a strategist, and I seem to have a “knack” for fusing innovative consumer ideas related to health and wellness with technical applications.

Q.  How do you take a highly-respected science and medical brand like Cleveland Clinic and launch it into channels that reach consumers?

A.  As any brand professional will tell you, launching successfully into new channels with no collateral damage to the current brand image and the present brand promise, is tricky.  360-5 from Cleveland Clinic is the endorsed brand approach we are implementing.  The online manifestation of this endorsed brand is www.360-5.com.  We are thrilled to extend the expertise and wellness practices of the Cleveland Clinic to a broader audience of wellness seekers online.

Q.  360-5 is a “catchy” brand.  What does it mean?

A.  360 degree wellness, 365 days a year.  “Total Wellness, Every Day” is our tag.  Everyone smiles when they say it, which is my test for a successful tagline!

Q.  What is your idea of wellness?

A.  Great question.  Wellness is difficult to define.  It is deeply personal.  Consciously or unconsciously, wellness seems to have balance and actions that help create or promote balance at its foundational core.  At www.360-5.com, we strive to arm patients, caregivers, consumers and physicians with truthful, fresh, inspiring and actionable wellness solutions for everyday living. Our team, led by Cleveland Clinic Chief Wellness Officer and New York Times best-selling author, Dr. Michael F. Roizen, has brought together mind, body and food solutions into a uniquely holistic package. That means at 360-5 we’ll show you how and why you can sleep better or have more energy, among many other topics, by looking at how you handle stress, your exercise habits and diet.

Q.  Interesting that the Cleveland Clinic, ranked as one of the “Best Hospitals” in America and No. 1 in the nation for heart care and surgery by U.S. News & World Report, would deploy a healthcare strategy that departs from its deep medical and surgical roots and revenue model.  Can wellness thrive in an academic medical center environment where invasive procedures pay the bills and keep the lights on?

A.  Well, you did want to talk about disruptive strategies!  Wellness thrives at the Cleveland Clinic because it is emphasized in our culture with everyone we touch, from patients to employees.  The goal of Cleveland Clinic’s wellness efforts is to minimize the physical, emotional and economic costs of illness through health and wellness services and education.  Cleveland Clinic has a strong history of leadership in the Wellness sphere.  As a top ranked healthcare institution, Cleveland Clinic has consistently sought to shift the national focus from providing “sick” care to promoting wellness.  From designating its entire health system smoke free on July 4, 2005, to no longer hiring smokers as of Sept. 1, 2007, banning trans-fats from its menus and appointing the country’s first Chief Wellness Officer, Cleveland Clinic is dedicated to creating a healthier environment for its employees, patients and community.

The Cleveland Clinic provides integrated medical care to patients in the United States, Canada and around the world, and continues to be on the cutting edge of on-going innovative approaches to collaborative patient care, technology, and overall medical, health and wellness advances.  The Cleveland Clinic’s mission is to provide compassionate healthcare of the highest quality in a setting of education and research.  The Cleveland Clinic is dedicated to making preventive care the driving force in medicine and providing clinical validation of the efficacy of health and wellness programs and products.  So YES, wellness can thrive in an academic medical center/hospital environment.

Q.  Tell us more about this mind, body, food approach that you are taking.  What does it mean, and how is it different?

A.  Have more energy.  Live a happier life.  Love what you eat.  Those three statements concisely sum up what it means.  www.360-5.com engages you in truthful, fresh and inspiring experiences.  Our unique “mind, body, food” connection targets all aspects of your health, with actionable advice that’s medically-backed and easy to follow.  That is how it is different.

Q.  What do you think it takes to get someone started on the path to taking better care of him or herself?

A.  When it comes to health and wellness, I believe small steps can lead to big results.  We know it takes work to be healthy, so we make the information on www.360-5.com as easy (and — gasp — as fun) as possible.  At 360-5, we make the science accessible (sometimes even helping you see the humor in how the body works!), giving you a deeper understanding of the complex and often mysterious nature of your mind and body.

We’ll show you how mind, body and food work together to help you feel better and fight or even reverse disease.  Even better, we’ll offer you small steps in every article (look for the Try This) to help you achieve your larger wellness goals.  Once you start living a healthier life, we think you’ll see how addicting it can be.  And that kind of addiction . . . we’re all for it!

Q: So, where should we start? You have been involved with founding a number of ground breaking biotechnology companies, life science research foundations, trade associations, philanthropic groups, and a whole host of public policy organizations.

A: I enjoy thinking ahead and trying to do the next new thing to advance science, biomedical research, and the business of patient-centered health care. I’m very impatient for change. I consider myself an unrepentant insurgent, renegade, and rabble rouser. I think that is the most powerful disruptive technology there is. That’s why I love the Disruptive Women in Health Care Blog.

But honestly, everything I do is in a lame attempt to keep up with my wife, Sharon F. Terry. She is one of the Disruptive Women Authors and a force of nature like the others here.

I have been burdened with the ability to visualize the dynamics of highly complex systems (like the health care enterprise) and make sense out of navigating or reorganizing aspects of the system to create new efficiencies. U.S. health care is the most inefficient and expensive system ever conceived of and implemented in the history of the planet. It is a wonderfully disturbing playground for a person like me. So, as a coping mechanism I have to create new organizations and social systems to help drive change and innovation.

I have been lucky to be associated with some really brilliant and creative people. For example, the great group who I worked with to start Genomic Health [NASDAQ: GHDX] and apply innovative clinical genomics to successfully change the standard of care for breast cancer in record time. I learned a ton from all the talented people there and from that commercial experience. It made me audacious about what was possible in the new era of optimized precision medicine, personalized medicine, technological innovation, and new approaches to health care delivery.

Q: So, why are you doing all these different things?

A: My kids made me do it! No, really they are the reason I do what I do today. A little over a decade ago, my two children were both diagnosed with a rare genetic disease a few days before Christmas. My wife and I were blown away. The diagnosis was traumatic. In hind sight, it was a seminal, life altering event. It had a profound effect on me as a man, a father, and a husband. At the time, I considered myself a failure at each. What could I do for my kids now? As a young Dad, I completely bought into the archetypal role of supporting, protecting and providing for my family. It was all I thought about. It gave me a clear purpose in life. So, after a few weeks of trying to cope with the emotional rollercoaster of my kid’s diagnosis, I decided to try to find a treatment intervention for their disease. That was the day I decided to do the improbable, potentially the impossible – tame a genetic disease. Take on the system as Just A Dad.

Q: What did you do next?

A: At the time, I was a manager at a large construction firm in Boston. I was involved with building the hospital, university, and biotechnology infrastructure of Boston and Cambridge through the 80s and 90s. I had a sense of the physical manifestation of health care delivery, drug development, basic research facilities, animal studies, and the emerging biotech boom that characterized that hotbed era in Genetown. So I needed to convert my experiential knowledge of what was above the ceilings and behind the walls to help my kids. So as a lay person I went about learning the science and medical lingo necessary to begin to understand how you would create a project management plan to tame a genetic disease.

I began to insert myself into places I was not qualified to be in. I encroached onto the world of scientists, researchers, and clinical investigators. I had unique access because these were “my” facilities. So after my work day in construction, I volunteered and joined prestigious research groups working from 6pm to 2am in the lab to learn alongside brilliant doctorial students. It was hands on learning about what genetic and basic biomedical research entails. My sleep habits were destroyed from then on. But, I also became absolutely fascinated with the new science of genetics and genomics. I got the sense that this technology and science would have irreversible effects on most things in the century ahead. I was only slightly correct. It has turned out to have a much larger impact. Genomics has shaped my career ever since.

Anyhow, we created a patient directed research foundation and we went on to organize an international biobank, patient registry, longitudinal studies, find the causal gene for my children’s disease. Patent it. Create and license clinical diagnostics. Create animal models. And finally launch human clinical intervention trials for the disease. It’s been an exciting few years.

We are now working at creating an industrialized system to tackle small molecule drug develop and clinical studies for rare and neglected diseases in a systematic way never attempted before. The next few years will be exciting too.

Q: You’ve done so many different things in the health care arena in such a short time, what’s the secret to your success?

A: My Mom says, I was just lucky… Thanks, Mom!
But I think it has a lot to do with trying to live life with a fearless attitude. Failure is an option, in some circumstances it is the most likely outcome. But I say, so what? I chose action and risk failure. I rush in and do things I think need to be done on things that matter. I have a belief, that if I’m always working to help alleviate human suffering and the burden of disease in this world then I want to make sure I’m exhausted at the end of each and every day. Hopefully I have a positive impact.

Q: What do you think about these achievements?

A: I’ve been blessed with wonderful and insightful children (excuse me, they are young adults now). Because of them I have become the person I am today. They helped me become a better Dad. That is the greatest achievement. We all traveled the world together to help organize the international disease community and help people around the globe. The most gratifying achievements have been helping various disease groups do the same thing; find genes, create diagnostics and therapies, as well as delivering services to patients in all kinds of circumstances. Helping folks do it faster and better than I did it. I can’t imagine doing anything else.

Q: What do you think your experiences mean for the future of health care?

A: I am Just a Dad. I got engaged as an advocate and information empowered lay person. I did nothing earth shattering. I just incorporated the emerging technologies that are available to most Americans –the internet, social networking, shared knowledge, the power of self organized groups and a desire to solve a problem. It’s a simple but powerful equation.

I believe as collective health literacy improves and the challenges continue to confront the financing and delivery of health care in this country there will be a catalyzing effect that will produce more empowered, disruptive men and women in health care.