http://www.meaningfulhitnews.com/2012/05/17/mark-versel-1944-2012/

An extract of the post below:

I am now vowing to dedicate my own career to educating as many people about MSA as possible and about the danger of uncoordinated care and poorly designed workflows. Interestingly, one of the last stories I wrote before my father passed and before I took leave was a piece in InformationWeek about patient engagement. I love the mantra of the Society for Participatory Medicine that I mentioned in the story: “Nothing about me without me.”

We send our condolences to Neil and thank him for writing about the Society for Participatory Medicine and our Meaningful Use Stage 2 comments in his Information Week article.

My personal favorites among several quotable lines in this article:

“Pressure that physicians feel to maintain a good business model threatens to overlook a critical part of our ‘product.’ In health care, the patient’s story and the relationship have ironically become the obstacle, rather than the objective.”

and

“Health care providers must embrace the goals of improved safety, efficiency, effectiveness, and timeliness, but must also realize that health care does not own health and care. If it is owned by anyone, it is owned by patients.”

Happy New Year, dear readers! May 2012 bring us closer to attaining patient-centered care.

[Update 11/25: the data visualization that Ken created is so extraordinary that we're adding it here, four days after the original post. LOOK how he helped his physicians "get" his medical history! What an empowered, thoughtful, creative, participatory patient. - e-Patient Dave]

Dave deBronkart’s TED talk inspired me. I went on a “damn data” collection mission by ordering data from all the places where my Crohn’s disease had caught up to me. I ordered medical records, medical bills, insurance information, and pharmacy data. It’s a collection worth about 13 years, 600 pages, and came from nearly 20 sources. Impressive, no? But it’s not having the data that’s important, it’s what you do with it that matters.

My ambition was to condense that epic volume into something useful. I love infographics. They’re quick and clear, they’re memorable and they tell a story. Another great attribute of having something visual is that you can see your data under a new light. It becomes a narrative you can step back from. Having a different perspective can lend itself to insights. The first infographic I created is called “My Life On Drugs.” Take a look: http://bit.ly/szDvUs (and above). It’s a summary of all the drugs I had to take each year. I counted everything even if it was given to me once. It makes a story.

There’s dramatically more information there than meets the eye. Patterns emerge. I’ll give a few examples.

You can see I have a history of inflammatory diseases — first was eczema, then asthma, and now Crohn’s disease. When my asthma was developing my skin was clearing up and when my Crohn’s was developing my asthma was clearing up. You can clearly see this transition just by reading from left to right. Perhaps they’re related?

There’s another useful discovery — it’s the inclusion of the Vitamin B-12 injections. As soon as B-12 was prescribed I no longer needed depression medication. I didn’t even have depression, I had a vitamin deficiency. How often does this mistake happen? It’s a horrid oversight and I’m sure I’m not the only victim.

The last observation I’ll make is that the combination of Remicade and azathioprine lost its efficacy and it landed me in more trouble than just before I was diagnosed — which I assure you was an awful lot of trouble. And then there’s a big drop in the number of drugs I’ve had to take post surgery. In retrospect I’d have chosen to avoid the drugs and opt for surgery back in 2001. It’s not the conventional medical practice but it’s useful to see a case study where drugs are not an optimal solution.

Along the way of creating this first infographic I’ve had to learn a lot about data requests, organization, and trying to make my health records digital. It’s been tedious, fun, and frustrating but I now have my own Electronic Health Record!

In addition to the infographic I’ve also put together a how-to manual of what I’ve done so far. My quest isn’t complete but I feel like I’ve got enough to share. If you like, visit diyehr.com to see if there’s anything you might benefit from.

Thanks to SPM member Elaine Schattner, MD for this June post, cross-posted with permission, that answers the question definitively. It’s about a three minute clip of a 2009 talk by Don Berwick – on why he fears becoming a patient some day.

A few weeks ago I had the opportunity to hear Dr. Don Berwick speak at the annual meeting of the Asso­ci­ation of Health Care Jour­nalists.

Berwick now heads the Centers for Medicare & Med­icaid Ser­vices. When he spoke in April, on trans­parency and how we might simul­ta­ne­ously cut costs and improve care, I thought his talk was pretty good. This morning, through Twitter, I came upon a short clip from a Berlin con­ference in 2009. Here, he tackles the meaning of patient-centered care. It’s near-perfect:

My favorite lines:

…The errors and unre­li­a­bility of health care are not the main reason that I fear that inevitable day in which I will become a patient…I can use my own wit to stand guard against them…

[rather]

…What chills my bones is indignity. It is the loss of influence on what happens to me. It is the image of myself in a hos­pital gown, homog­e­nized, anonymous, pow­erless, no longer myself. It is the sound of young nurse calling me “Donald” which is a name I never use, ‘It’s “Don.’…

It is the voice of the doctor saying ‘we think,’ instead of ‘I think,’ and thereby placing that small verbal wedge, the pronoun ‘we,’ between himself as a person and myself as a person…

Bravo!

Why I like this clip so much is that Berwick gets the nuanced lan­guage of med­icine in a way few doctors, in my expe­rience, do. He’s not so much afraid of data and making deci­sions or even errors, which are in theory sur­mountable problems, through better infor­mation and edu­cation, and despite every­thing may not lead to a “cure” or even a person’s sur­vival, per se. He most fears being per­ceived as an object, without respect for his con­cerns and preferences.

That is my greatest fear, too.

The November 2011 issue of Reader’s Digest reads in big, bold print, “50 Secrets Nurses Won’t Tell You.”

Articles like this create fear and mistrust in the patient community.

The front of the article states, “Doctors are clueless about what really happens in the beds, rooms and halls of our hospital.” Really? In my experience physicians are very well aware of what is happening in the bed. I had just had a major vascular surgery in 2009, when I developed chest pain in the ICU. Who was there at the side of my bed reading my EKG and ordering the nitro drip? The ICU nurse? No, the intensivist. My nurse was amazing. She monitored my pain, adjusted the drip while monitoring my vital signs. It was a team effort.

The next time I am admitted to the hospital should I be suspicious of my vascular surgeon who held my hand and informed me how my surgery went? He drew pictures so I understood and patiently listened to me while I asked questions about my prognosis. What about the fact that the surgeon listened to my suggestions on what I thought could make my recovery successful. Together as a team we made decisions about my discharge. My surgery and all that accompanied it was a positive experience because participatory medicine was taking place.

The Readers Digest states that they “…went to the experts.” Now don’t get me wrong, I have been a registered nurse for almost 2 decades, and many nurses are exceptionally intelligent, and dedicated. But I disagree with the light Reader’s Digest put nurses in. We are part of the team, there are no experts. The doctor nurse relationship is not “them against us” like this article makes it out to be. I am member of The Society of Participatory Medicine who’s mission is to bring together e-patients and health care professionals. We can do better both as health care providers and patients; telling “secrets” is not the answer.

Personally I found a few of the “secrets” offensive and not true of the nursing profession. The article “50 Secrets Nurses Won’t Tell You” is a small representation of nurses, many who are professional and work with values and a code of ethics.

Whatever it takes to sell a magazine, right?

I could go delve deeper into this article but I suggest you read the article judge for yourself, let me know your thoughts.

SPM member Howard Luks MD, orthopedist, had some symptoms. He spoke to his physician and GI doc, who gave him pills. It didn’t make sense to him. So he did what a lot of us do:

“Then I headed onto a few patient-centric web sites. The information I found there was enlightening. There were a number of stories that were identical to mine. There were a few simple strategies that were suggested. I adopted them, and guess what? Sleeping well, waking up rested, no pills, no medications.”

And check out what happened when he dutifully reported all this to his docs. :-)

But the most disturbing part of the interview for me was watching Walter Isaacson, a former editor of TIME Magazine, talk about how Jobs was in complete denial about his cancer.

Rather than seek immediate modern cancer treatment once diagnosed, he turned to a holistic, macrobiotic approach. That approach delayed treatment 9 months.

Whether it may have been “too late” is hard to say after-the-fact. But if you delay any cancer treatment, the results are rarely good. In Steve Jobs’ case, they may have been untimely — and fatal.

The cancer that was to kill him was discovered accidentally when Steve Jobs was being seen for kidney stones back in 2004, according to the CBS News report. Once the doctors found the cancer and do a biopsy, they tell Jobs the good news, “This is good… this is one of those slow-growing, 5% of pancreatic cancers that can actually be cured.”

But Steve Jobs doesn’t get the cancer operated on right away.

“He tries to treat it with diets, he turns to spiritualists, he goes through various ways of doing it macrobiotically,” according to Isaacson. “And he doesn’t get an operation.”

“By the time they operate on him [9 months later], they notice it has spread to tissues around the pancreas.”

Steve Croft: “How could such a smart man do such a stupid thing?”

“You know, I think that he kinda thought that if you ignore something, that if you don’t want something to exist, you could have magical thinking. It had worked for him in the past.”

The worst part, for me, was that even though Steve Jobs continued seeking secret cancer treatments, he was telling everyone he had been cured, according to the CBS News interview. And that’s what people believed — including Apple stockholders — until 2008, when they saw how much weight he had lost at a public Apple event.

Jobs, in his role as a technology superstar, could’ve also taken on the role as a health advocate rockstar. Instead, for 7 years, he sought to constantly hide and downplay his health problems.

So while I admire his marketing and product management savvy (sorry, Jobs was never a technologist), I feel a little disappointed in the way he dealt with his own health concerns. Instead of talking about them openly and publicly — and helping others understand there’s nothing to fear about doing so — he felt like he was so “special” he was going to beat cancer with his magical thinking.

I admit there’s a delicate balance between celebrity and advocacy… But it seems like, if you’re a celebrity, you get to a point in your life where you can use your celebrity and its influence to actually help others in a very humanitarian and altruistic manner by simply acknowledging the plain facts and talking about your battle with cancer publicly. This is something e-Patient Dave does every year. It helps others understand and feel safer to acknowledge their own foibles, and seek out diagnosis, care and treatment.

We all know the sad ending to this story, and I find little joy in writing these words.

But I write them to remind every one of us — myself included — that we need to stop the magical, psychological thinking… That every one of us is somehow “special” and can beat cancer through positive thought alone. Positive thought is very beneficial and helpful in medical treatments. But it cannot — alone — beat cancer. It must be combined with the best medical treatments we have available.

Together — through mind and body — cancer can be beaten. Sadly, Steve Jobs did not understand this until it was too late. Hopefully someone out there reading about his story will be moved to not wait to get treatment.

In the CBS News interview, biographer Isaacson describes what Steve Jobs had as “pancreatic cancer.” MedPage Today contributor Michele Berman, MD begs to differ:

Steve Jobs most likely had an islet cell neuroendocrine tumor, a neoplasm that is considerably more rare than pancreatic adenocarcinoma, is usually detected earlier, and has a better prognosis and different treatment options, including liver transplant. Mr. Jobs’ liver transplant was performed about 17 months ago at Methodist University Hospital in Memphis because he was the sickest patient on the waiting list and had the highest MELD score (Model for End-Stage Liver Disease). Mr. Jobs subsequently urged everyone to become an organ donor.

To me, this is a bit like splitting hairs. I’m not sure what benefit there is diagnosing celebrities from afar when you do not have their medical records or histories in front of you. And yet, audaciously, Dr. Berman’s headline screams, “Steve Jobs Did Not Have ‘Pancreatic Cancer.” Unless Dr. Berman was his physician, she could not make such an outrageous claim.

This article came out on the same day as the e-Patients.net guest post by Dr. Neel Shah about the power of storytelling to help make healthcare more affordable.

Last year, the nonprofit that I direct launched an unusual essay contest — we asked doctors and other care providers to tell us about their mistakes, including times they made decisions that inadvertently led to unaffordable medical bills. We also asked patients to share stories about their struggles with lack of price transparency in the system. Ultimately, we collected more than 100 stories from patients and care providers across the nation that illustrated the importance of cost-awareness in medicine, and then made these stories part of the public discourse by widely sharing them. The stories generated an impassioned response in the national media, and showed how transparency helps patients financially plan for their care, and also helps doctors keep medical bills affordable.

However we also learned that knowing what tests and treatments cost is only the first step. Then, you have to know what to do with that information, and using cost information at the bedside can be both ethically and pragmatically challenging. How do you determine which tests are not only affordable, but of high value? How can cost-consideration be reconciled with our ingrained ethos to do everything possible? How do you fit the time and effort that cost-consideration requires into a busy clinical workflow? How do you apply decisions to conserve resources in a way that is equitable to all patients?

As a result, we’re doing the contest again. For the second annual Costs Of Care Essay Contest we are not only asking for stories about unexpected medical bills or difficulty figuring out medical costs, but also asking for positive stories about ways doctors and patients have figured out to save money, while still delivering high value care. To help judge the submissions we recruited incoming Harvard University Provost and health economist Alan Garber, along with former White House Budget Director Peter Orzsag, Surgeon General C. Everett Koop, and others. $4000 in prizes will be offered, $2000 of which will be reserved for medical students and other care providers.

The evidence says that there are ample opportunities to save money in our routine decision-making without compromising quality of care. A recent survey from the management company Bain & Co. indicates that as many as 80% of physicians believe bringing healthcare costs under control is part of their responsibility. The Physician Charter states that avoiding unnecessary tests and providing cost-effective care is part of our professional obligation. However, despite the opportunities to save and wide recognition of its importance, cost-consideration has yet to penetrate clinical practice.

Ultimately, it will be up to a new generation of physician-leaders to carry this charge. Are we up to the challenge? The evidence is clear but sometimes a good story can be worth 1000 academic papers to catalyze change. If you have one, we would love to hear it. Submissions to the 2011 Costs of Care Essay Contest should be no longer than 750 words, and should be e-mailed to contest@costsofcare.org by November 15, 2011.

“I feel cornered, at the end of my rope, trapped!” exclaimed Father Lee. “Is everyone cognitively diminished who has survived encephalitis?”

Father Lee posted that question recently to the online support community of Encephalitis Global, Inc. which I co-founded more than a decade ago. Father Lee was struggling with his relatively new life role as an encephalitis survivor. (Encephalitis is a rare and dangerous brain inflammation usually caused by a viral infection.)

Members of Encephalitis Global responded with practical advice, links to professional medical information and words of simple unadulterated compassion. Here, I thought, is a priest, who has ministered face-to-face with thousands of people in need–now struggling with his own anguish and despair. And here were people from across North America and beyond, reaching out with hands of support to him. Virtual hands, to be sure, but real support.

One member replied to him, “From our collective experiences, you are just doing too much, too soon. Prioritizing is difficult when so many other people need you, but you need to take good care of yourself.” Another noted, “Recovery from this disease requires that we pare down our life to the essentials.”

“The best we can do,” added a third, “is make accommodations for what we can’t do, and just move on from there. Things do improve as our brains adjust.”

Father Lee is an Episcopal priest in the US who last year contracted viral Meningoencephalitis (meningitis and encephalitis). He was hospitalized, in a coma, and his family told that it was questionable as to whether he would survive.

I myself contracted Herpes Simplex Encephalitis (HSE) in 1999. My family struggled in vain to learn more and understand what I was dealing with. Due to the impact of encephalitis, I am now legally disabled and spend my time sharing information and support with others. My friend and organization co-founder, Ingrid Guerci of New York, was touched by HSE in 1995 and left with some residual challenges. However, she was able to return to work, and spends time daily helping people touched by encephalitis.

Father Lee’s struggle to live the “new normal” is a situation we often experience with new members. There is still so much to learn about encephalitis–daily life “post-e” can be hell not just for the survivor, but for family and friends as well. For many, thankfully, there are support systems like online communities. The Web allows us to connect with others like ourselves as never before.

It’s not uncommon for newer members of the Encephalitis Global Support Community to ask how they should feel, and what they should expect post-encephalitis. Perhaps the most important lesson is that recovery post-e is measured in a two-year time frame – and continues past that date. Family members must be extremely patient as they watch their loved ones struggle to remember words, names, and abilities that came naturally pre-encephalitis.

The social impact of encephalitis is alarming. Over the past decade, members of Encephalitis Global have joined us from so many walks of life: a fiancée, heartbroken that the loved one to whom she is engaged really does not remember her or the promise that they shared; a man, furious with encephalitis and the fact that, now, his spouse is the family’s sole breadwinner; school children who now face their education with increasing frustration as their peers move ahead and leave them behind; even a farmer, who can no longer return to his fields because of his impairments. Many encephalitis survivors simply cannot return to the multiple challenges of working full time.

I recently asked Father Lee, “What do you receive from Encephalitis Global?” He replied, “A community of understanding with which I can share my frustrations and ask my questions. Here I get real, honest responses from people who have compassion and yet have ‘been there and done that’ with respect to this hideous illness. There’s nothing like connecting with someone who has survived encephalitis and then, also, survived the stumbling moves of so many in the medical community.”

A few days after Father Lee’s initial post, he returned to our online community to report that he was feeling a little better and, in following suggestions from fellow community members, had begun taking steps to reduce some of his work-related stress.

Thomas Jefferson once said, “Who then can so softly bind up the wound of another, as he who has felt the same wound himself?” These words describe the theme at Encephalitis Global. We are not medical professionals, but we are people who have previously experienced the post-encephalitis struggle. That experience is what gives us the strength and ability to help others, including Father Lee.

Wendy Station of Vancouver, BC, is co-founder and President of Encephalitis Global, Inc., a nonprofit organization. The online forum, operated in partnership with the company Inspire, has over 1,000 members worldwide and exchanges more than 300 messages posted weekly, making it the most active encephalitis forum in the world.

Paul Roemer (LinkedIn, Twitter ) is speaking this Thursday at Health 2.0 in Bethesda. He’s a Twitter friend who has a lot in common with me: a cancer kicker with a business background, who now sees himself as an e-patient.

There’s one big difference: he went through his first major medical experience years before I touched CompuServe. He was empowered, engaged, proactive in his choice of physicians, self-activated from head to toe, and he did it with no template (e.g. “be an e-patient”) or online resources. You might say he was “e, with nothin’ but attitude and a phone book.”


As you read Paul’s story, think how different life is today – and how much of his attitude still applies today. For better or worse, Paul is a take-charge guy who was not going to let anyone else define what “health” or “healthcare” means: he was fully empowered and responsible for his decisions.

I learned I had testicular cancer way back in the dark ages of medicine—1985. I learned about it while on a consulting engagement in Amarillo, Texas. The entire project team was at a colleague’s apartment having dinner. The local news channel was running a short piece on how to detect the cancer. Someone suggested the television be turned off, stating the piece was inappropriate for a dinner party.

I knew the moment I heard the first part of the piece I had cancer. I walked out of her apartment to my sparsely furnished apartment—decorated in what appeared to be Early Conquistador including black plastic beaded and amber pressed glass lamps and sconces. Inside the single drawer of the rented press-board night stand was a well-worn thin copy of the Yellow Pages—when was the last time you actually needed to use the Yellow Pages? My immediate goal was to do what I had to do to remove the word cancer from any conversation having to do with me.

I scanned the ads and started calling any doctor whose ad listed cancer. I don’t remember how many calls I made, but I finally found a doctor at his home. The call was brief and to the point. I told him I had testicular cancer, described my reasoning, and listened to him tell me I was probably right. We met at his office the next morning and then called my parents. It was the first time I had ever used the word testicle in a sentence—how sheltered is that?

Within a few days I was scheduled at M.D. Anderson, Hopkins, and the Dallas Medical Center, where I was living. I didn’t want to go to Hopkins for treatment because I felt that had I stayed in Baltimore, my home town, my parents would treat me as though I was sick. I didn’t feel sick, and was not in the mood to act sick.

To take some of the pressure off, I arranged for the surgery such that my parents could not arrive until I was coming around. Along with my parents, both of the girls I was dating were sitting at my bedside when I awoke—so, at least I had that going for me.

At the time, there was no internet, no WebMD, no place to get up to speed on my illness, its treatment, or what to expect. I was on my own.

From what I remember I had three of the possible types of cancer. It had also spread to my right lung. I do remember that watching the monitor as they inserted the needle in my chest to biopsy the lump. Then it was my turn to play oncologist. Having not attended medical school I had to rely on my wits to understand my options.

The argument presented to me was as the cancer had spread from my testicle to my lung, it probably had made several stops along the way. The oncologist strongly suggested a radical lymph node dissection as the next course of action. My Speedo days would be over before Speedos were even invented.

I questioned his recommendation, asking why if the chemo was strong enough to kill the cancer in my lung it would not also be strong enough to kill all of the cancer cells in my body. He did not like my question, I did not like him. I found another oncologist who told me my question made sense—I hired him because he listened.

I did not like having to figure out my survival on my own, but I was going to take responsibility for as much of me as I could. A friend of mine from church put me in touch with a survivor. It was huge just being able to speak with someone who was a walking testimony that the treatment could work.

Everything I learned was word-of-mouth, hand-me-down information. Lots of rules—stay out of the sun; do not cut my finger nails, “pee in the ‘hat’ so we can make sure your kidneys have not shut down.” My nurses were not familiar with having someone come in with their own rules. I taped a sign to my door, “Do not wake me at 6 AM to give me a menu, I will not be ordering.” I had friends bring in food for me, figuring that if I was going to throw up I would at least take control of what I would vomit.

I bought a wig—I was the only one who didn’t think it looked like a wig. Despite orders to the contrary, I laid in the sun every day I felt good enough to walk to the pool.

Treatment. Three rounds of five days of in-patient with three types of chemo drugs, including Cys-platinum—guaranteed to ruin the week you are in treatment and most of the week after treatment. That drug, as good as it was at killing the cancer, had the gift of continuing to remind me it was in my system for days after being released.

Side-effects. Nobody said much about them until they snuck up on me. Overdosed on Reglan at an Amy Grant concert—lost control of all of my facial muscles. My tongue swelled to the point of making it difficult to breathe and I couldn’t keep my head erect. Fortunately, an IV of Benadryl fixed everything in minutes.

An injection in my sciatic nerve left me in pain for months. During one stay at the hospital, an infiltration of one of the drugs was so painful it almost made me forget how nauseating the chemo was.

After the second round of chemo I flew home to spend a week with my parents. My hair started to fall out during the flight. The next morning in the shower all of my hair came out. I remember my father telling me not to be upset. I told him that although we were now both bald, he lost his over several years and had had more time to adjust than I.

Halfway through the final round I unhooked my IV. It wasn’t logical, but I wanted to regain control of my life; no more nausea, no more tubes and told my nurses and girlfriend that I was going to Colorado. I never made it past the door of my room: my girlfriend grabbed the first nurse she saw and they talked some sense into me. And when it finally was time to check out, I had my girlfriend bring champagne and we drank it there in the room. Not what they were accustomed to seeing a patient do – but this was healthcare on my terms.

My last memory of the cancer was a couple of weeks after my final treatment. The CAT scan was clear and I was driving around the country visiting friends, having a new lease on life. At the house of one friend in Carolina I dove into the pool to cool down. The water felt good. I swam free-style, my wig passed me—I think it was doing the breast stroke.

It took years before I was able to walk back into a hospital without the medicinal smell bringing it all back. Things have changed for the better for patients in the last two decades. You can get information from survivors, information about the disease and its treatment options, learn about your doctor, the hospital, and what to expect. Additional information won’t make the chemo any better; it will make you think of the treatment as people doing things with you instead of to you.

The one thing I never overlooked was that the surgery and treatment worked.

I encourage you to take charge of whatever portion of your healing you can.

^{Paul Roemer has built several highly successful consulting organizations and has founded and managed three independent consulting firms since 1996. He is an executive who leverages leadership expertise in P&L management, international business development, process reengineering, customer relationships and strategy design/execution to drive dynamic gains in revenue, profit and performance for the enterprise in startup and mature environments.}

The health plan’s surgeons don’t have much experience or success with the repairs, so doing the right thing would require costly – but necessary – out-of-network surgery. The family fought for years, researching and documenting, and won.

Yesterday Diane sent this update:

Great news about Hilary’s heart! She had an echocardiogram and follow-up cardiology appointment a couple of weeks ago – a year and three-quarters post cardiac surgery. Her cardiologist said that Hilary’s heart valve and the heart itself are both now “normal” and that she can expect the repair to last a very long time.

It may, indeed, last until she’s a little old lady. At that point, she may then have a bit of leakage such as other little old ladies her age might experience.

No guarantees, of course, in any of this, but we both felt enormous relief to hear that she’s likely looking at a very normal life and life span.

Congratulations to both of you!

Trisha Torrey wrote about the Engelmans yesterday on the About.com Empowered Patient blog, proposing that the difficulties the Engelmans faced constitute a new kind of “medical error,” and ought to be classified as such. I can’t disagree: in most of my speeches I say it’s a fundamental human right to know what your options are and pursue them.

I heard her speak last month at the National Library of Medicine’s e-Patient Conference. (Yes, they had an e-patient conference!) She’s a terrific speaker – and wait till you see what she’s created as her e-patient activism. (I took the liberty of boldfacing a couple of items.)

Everyone comes to their “e-patientism” through a unique and personal pathway.  As a 1950’s tv show once opened “There are 8 million stories in the naked city. This is just one.”

My e-patient story starts with another icon of classic television, Perry Mason.  Perry Mason inspired me to want to become an intrepid problem solver, truth seeker, and advocate.  That mission stayed with me through college at Harvard and law school at Georgetown.  I was a child welfare attorney and interned at the U.S. Department of Justice in the Criminal Division, Child Exploitation & Obscenity Section, specializing in applying law to the online environment, helping to capture online pedophiles.

However, I had a liver transplant due to autoimmune conditions between first and second years of law school, an experience that forever changed my perspective and path.  With several months in the hospital being evaluated for transplant, having my colon removed (ulcerative colitis), and then the transplant, I had a frontline view of the healthcare system – issues with insurance companies, inadequacy of patient materials, doctor-patient dynamics (good and bad), the role of nurses, medication error reduction, infection control (106 degree fever and reopening a wound – didn’t quite get that one right), medication adherence, pharmaceutical innovation, on and on.

Blessed to receive a liver — thousands do not — I felt called to ensure that other patients benefited from the great parts of our medical system and avoided the frustrating and downright dangerous parts.  If I could make navigating this process or going through a similar experience better for families and individuals, then I would be doing something worthwhile with this second chance at life.  It seemed a natural transition of my advocacy skills from children to patients.

Roll the clock forward 15 years and I have the privilege to be a “professional” patient advocate and have constructed an entire company, CryerHealth: Patient-Centric Solutions, around the idea that patient perspectives are what should drive healthcare. Serving as a catalyst and facilitator for companies to work with patient advocacy organizations and medical societies to co-create meaningful initiatives and systems innovation is highly rewarding.

Last October I began tweeting and then blogging under the name DCPatient (a pun – Donna Cryer and Washington DC) and found this fabulous cadre of E-patients. For the first time I felt, “These are my people.  This is the language I’ve been searching for to describe the power and potential of  personal patient advocacy.” My passion and energy were renewed and taken to an entirely new level.

My call to action now — Enlisting a cadre of fellow e-patients to not only improve navigation of the existing system but shape the system as policymakers on committees, government and hospital boards, and even running for office. I recently began my own 5 year term as a patient representative / consultant to the U.S. Food and Drug Administration, serving on advisory committees as a voting member and otherwise providing direct patient input into the drug approval process. Let me tell you, testifying at a hearing is great, but voting feels much more satisfying.

I am convinced that unless patients take their seats at the table when healthcare policy decisions are being made, we only have ourselves to blame if the system does not start to better reflect our needs and concerns.  We owe it to ourselves and all the patients and families coming behind us to step up and use whatever training and talents we have to advocate whether in our own doctor’s visit, an online community, or on a national stage.

Be well & Be vocal!

Donna Cryer/DCpatient



We often talk here about empowered patients’ struggles to get – or even create – the care they need. Usually we’re talking about it in a medical sense. But as far too many people know, sometimes there are other obstacles. Laurie Todd is, to me, an outstanding example of someone who wouldn’t take death for an answer – neither from doctors nor from their HMO. She says winning these battles is her calling – and she has made it her career.

My name is Laurie Todd. I am an e-patient, and I am the Insurance Warrior.

In March 2005, I was diagnosed with late-stage appendix cancer, rushed into surgery, and given months to live. I immediatley lost my business, my income, my savings. Finally, I was sent to the oncologist, who said, “There is no treatment for your disease. And, even if there were, they wouldn’t pay for it.”

That was a Friday. I spent the weekend at the computer. I pored over medical journals until late into the night. It didn’t take long to discover that there was a tried and proven treatment for my disease, involving another fourteen-hour surgery and heated intraperitoneal chemotherapry. This treatment could give me an 80% chance of no recurrence.

My HMO did not have this treatment available in their network. So, I wouldn’t be allowed to have it.

I found the world’s expert on appendiceal cancer — across the country in Washington, D.C. Then, I returned to Seattle to figure out how to make my insurer pay for it. I spent two months reading, studying, gathering proof. What I really needed was the finest lawyer money could buy. However, since I had no money, I had to turn myself into that lawyer.

Three months after receiving my twenty-three-page War Documents, my insurer called me, “We have decided to pay.” They paid it all. My expenses during 2005 were approximately $345,000. My share? Nine dollars.

I had won the treatment; now I had to undergo it. After my fourteen-hour abdominal surgery and heated intraperitoneal chemotherapy, I hit the jackpot of complications. I spent forty days in the hospital, wondering if I would ever get home. I returned to Seattle — in a wheelchair, too weak to brush my teeth — but free of cancer.

It wasn’t long before people started calling me, “We heard you had a great victory. My insurer won’t pay for my lifesaving treatment … can you help?”

As of today, I have won fifty-three insurance appeals, for lifesaving treatments costing between $100,000 and a half-million dollars. Many insurers, many conditions/diseases, all over the United States. All won in a week or less.

In 2007, with the backing of a major cancer research foundation, I published my first book, “Fight Your Health Insurer and Win: Secrets of the Insurance Warrior.” This book has sold thousands of copies, and has helped hundreds of patients to win their own insurance battles.

In May 2009, I published my second book, “The Sample Appeal: More Insurance Warrior Wisdom.”

I have addressed general audiences at public libraries and service clubs. I have spoken to groups of healthcare professionals, cancer patients and caregivers, social workers, and benefits administrators. In May 2009 I addressed an audience of two hundred doctors and patients at the Liver Symposium in Chicago.

Cancer came through my life like a tsunami, and swept everything away. I opened my heart to the experience, and found the way to survival. When others found me, I could not refuse to help them. And so, my previous life passed away, and a new profession found me. People look for that one thing that nobody else can do — their right livelihood. It took an advanced cancer, a healthcare system that thwarted me at every turn — an an open heart — for right livelihood to find me.

Cheers,

Laurie Todd
www.theinsurancewarrior.com

Cheryl Greene is third from the left in the banner at top of this blog. She’s a long-time friend of our founder “Doc Tom” Ferguson, a board member of the Society for Participatory Medicine, executive producer of DrGreene.com (AMA: “the pioneer physician web site on the Internet”), and oh yeah, wife of Alan Greene MD.  And a heck of an e-patient, starting ten years before I ever had a CAT scan.

This stuff matters. These are stories of real lives facing lethal threats. As you read this, try to immerse yourself in the experience of someone who tried for 15 years to get pregnant, gave birth, faced a magnificent and much-longed-for future, and was suddenly told she had months to live.

This is real. And now, like many e-patients, she’s paying it forward.

Cheryl has just passed a phenomenal milestone. Here’s her story, cross-posted from DrGreene.com last month.

___________

This September8, I went to my doctor for my annual physical. I’m very diligent about getting my regular checkup because I have a history…

On March 22, 1996 I was diagnosed with stage three inflammatory breast cancer and this doctor, my gynecologist, has been with me the entire time – she was my doctor even before the diagnosis, back when I was struggling with infertility and trying to have a baby. She was the very person who diagnosed the breast cancer. She is a phenomenal physician and a very trusted advisor, and now she is a friend.

And this year, my doctor, my friend, looked at my charts and my paperwork, then turned to me and said some of the most beautiful words I’ve ever heard: “We can now call you cured.”

My breast cancer is gone. Done. Over. Nonexistent. We don’t have to use words like “remission” or “no evidence of disease” or talk about a “probability of recurrence.” This cancer that almost took me away from my children and my husband is truly cured. And just as I remember that day in 1996 when this same woman told me I had a deadly form of breast cancer, I will forever remember the day she told me I was cured.

I want to tell my story publicly for a number of reasons.

• First, my diagnosis of breast cancer was one of the reasons Dr. Greene and I changed our lifestyles and dedicated ourselves to sharing health information via DrGreene.com.
• Second, my experience as a cancer patient taught me important lessons about how patients need to participate in their own healthcare.
• And third, because I want to spread the word that people can live through a fatal diagnosis, even when the odds seem overwhelming.

My doctor told me that when she talks to other women with breast cancer, she calls me her poster child. What I had was supposed to be fatal, and if I can beat that cancer, others can, too.

Getting the Diagnosis: All You Hear is “Cancer”

I tried for 15 years to get pregnant, and when I was told that we should prepare to welcome a baby boy, I was determined to do everything right. I was prepared for the challenges of breastfeeding, but it turns out that my son and I were the perfect nursing pair. He did a great job of latching on and drinking, and I did a great job of producing “liquid gold.”

Then I developed a breast infection. Many nursing women have them – painful, but no big deal. I felt a lump that seemed like a clogged milk duct. But when the infection went away, the lump stayed, so I went back to the doctor.

The doctor came in and examined me. My son, then 9 months, was on my lap, and she laid one hand on my breast. Then she said abruptly, “Ok, you can get up now,” and started ordering tests. Later she told me she knew what the lump was as soon as she touched me.

I was very lucky. From the time I had the breast infection to the time I had the definitive diagnosis was six weeks. Breast cancers in breastfeeding women are rarely diagnosed this quickly because the breasts are so lumpy when you’re nursing.

But when the surgeon came in and told me I had breast cancer and I had to stop nursing, all I heard was, “YOU HAVE TO STOP NURSING.” I didn’t listen to the details about how serious this cancer was.

When you’re diagnosed with something that’s really devastating, there’s only so much you can hear. For me it was that I couldn’t breastfeed any more. All I could think of was, “How will I feed my baby?”

A couple of months later, I sat in my oncologist’s office and received more bad news. He was talking about treatment and told me I had only months to live. But before he told me my prognosis, he told me, “YOU HAVE TO HAVE REALLY STRONG CHEMOTHERAPY AND YOU ARE GOING TO LOSE YOUR HAIR.” That’s all I heard.

If you are close to someone who has just received very tough news, she may not realize what the actual news is yet. One of the best gifts you can give this person, besides just being there, is to accompany her to the doctors’ offices and write down everything the doctors and nurses communicate. Then give the patient some time to digest the big news and schedule a quiet time to go over the other details. This is a very vital service a caregiver can provide for a patient in need.

Getting Treatment: How I Became an e-Patient

When I started treatment, my goal was to make sure the medical staff thought of me as the perfect patient. I was going to do exactly what they said to do and follow all the rules – and I was going to be happy about it.

The first six or seven months, that was the way I operated. I went through chemotherapy and a lumpectomy. At one point the team decided I should have a port implanted in my chest so the drugs could be administered without needles in the arm.

I preferred to undergo the surgery under conscious sedation to implant the port because I didn’t seem to recover as quickly when I was fully sedated for a surgery. The anesthesiologist was someone I knew, and we were talking before the surgery. Then they put the drape up between my face and the surgical field so I couldn’t see where they would be cutting. I was still very aware of what was going on even though I couldn’t see it or (theoretically) feel the surgery. I heard the anesthesiologist say, “Ok now – no whining.” I steeled myself, “I’m going to be good and I’m going to be strong and I’m not going to whine.”

But the surgery was not what I expected at all. During one part of the procedure, when the surgeon was using what seemed like a hammer and chisel to pound the port in place inside my chest, I didn’t think I could take it. I was trying so hard to be strong, but it was awful and I felt like passing out. But I didn’t whine.

After the procedure, I told the anesthesiologist how hard it had been. And his face contorted and turned white. “Why didn’t you tell me?” he said, upset. “It’s my job to make sure you’re comfortable!”

“But you said, no whining,” I replied.

I was shocked when he said, “But I was talking to one of the nurses.”

Light bulbs went off. Right then I realized that I was the only one in the room who had information about how I was feeling, and it was my job to communicate that. I needed to stop being a compliant, non-complaining patient. I needed to speak up and share the information about what was going on inside my body with the rest of the people who were working with me to try to fix it.

In the course of the next six to seven months, I completely changed how I interacted. I learned how to give myself a shot I had to take daily so I didn’t have to wait on a nurse or get an appointment. I worked with my doctor on a daily plan for my medication, which needed to be adjusted regularly when we were trying to figure out what would work. I had gotten to the place where I knew what I needed. My doctor was reviewing my suggestions, but I was making decisions. I credit that engaged, that empowered, behavior as one of the reasons I was cured.

Enduring the Journey, Finding the Cure

I started off with the strongest Western medicine available, and at the end of my treatment, I was in a very vulnerable position. The cancer was gone, but the first year after treatment has the highest risk of recurrence. And cancer that comes back during this time usually spreads very quickly and is very resistant to more treatment.

I decided I wanted to be as involved as I could in attacking this thing. I found about a trial at Stanford that the coordinators were having trouble finding participants that fit the critera. You had to have been diagnosed with stage three or stage four breast cancer, and you had to be done with treatment with no evidence of the disease. The hard truth is that they couldn’t find many eligible patients because there weren’t many of us who were surviving this disease. When I was first diagnosed Alan tried to find people online with my cancer, and he couldn’t find anybody. He just kept finding memorials for people.

So I enrolled in the FGN1 trial at Stanford. I knew I had a 50/50 chance at getting the drug, but either way, I was determined to do it. Either I got the drug, and perhaps got help, or I didn’t and hopefully helped others.

The trial was an 18-month chemotherapy treatment, but I knew right off that I was getting the actual drug and not a placebo because I had to be hospitalized because of the side effects. They adjusted my dose a couple of times because I was so sick with the side effects, and they actually asked me if I wanted to drop out. But I wound up completing the trial because I wanted to help find a treatment that would help more people than the conventional chemo.

After the trial, the doctors told me that of the six women at Stanford who were on the trial, several on the placebo had recurred and one had died. At that time the cancer had not come back in those of us who received the actual drug. I haven’t been able to track down any of the other women in the study, soI don’t have any long-term data. Unfortunately the side effects turned out to be too serious to take the drug to market, but I’m grateful I persevered and got the full treatment.

There’s no doubt that the chemotherapy is one of the major reasons I’m here to tell my story today, but I’m fully convinced that my mindset played just as significant a role. When I was diagnosed, I didn’t absorb their message that I was going to die. I heard what they were saying, but I was convinced that the fatal diagnosis didn’t really apply to me. At the same time, I can remember realizing that I needed to live every moment to the fullest.

______

Humans are capable of two diametrically opposed ideas at the same time. I remember one morning in particular waking up and feeling totally exhausted. I felt tired on the cellular level, and all I wanted to do was just turn over and go back to sleep. But I said to myself, “You may never feel better than you do right now, so get up and get dressed and go play with that baby.” I remember feeling like I didn’t really accept this diagnosis and that I was going to make it, yet coming to the conclusion that I needed to live every moment because they might not come again.

That combination really served me well. And the take home lesson for me was that it is really important to live today and not miss today. I really learned to take advantage of opportunities… to seize the day.

What are you doing today to live this day to the fullest?

Life after Breast Cancer

Although it was just a couple of weeks ago when my doctor looked me in the eye and called me cured of the breast cancer that had almost ended my life, I’ve actually considered myself free from cancer for quite some time. When I was diagnosed, Alan and I took a serious look at our lifestyles and our environment and made significant changes that last through today. We share many of our insights on the benefits of healthy living here on DrGreene.com, and we’ve come to embrace our good health and to enjoy our good days.

I fully believe that some of the healthiest people in the world are those who are living with a chronic disease and managing it well. Those of us who have gone through a life-changing threat to our existence have sought out information about the world we live in, the food we eat, the air we breathe… we want to do anything and everything we can to regain and maintain our health.

People with diabetes who watch what they’re eating and control their disease with diet and exercise are healthier than most disease-free folks who eat junk food and spend their evenings on the couch. People with asthma who avoid second-hand smoke are exposed to fewer toxins. We survivors of diseases just seem to be more aware of what keeps us healthy and what will make us sick because if we don’t pay attention, the repercussions could be very serious.

____________

Some days I’m really angry about what cancer stole from me. I was breastfeeding one day and two months later I’m in full menopause with hot flashes because of the chemotherapy. It was insult to injury because I hoped to have another child at that point. During my treatment I opted to do everything I could to keep my breasts because I fully believed I would nurse again.

But the anger about the cancer doesn’t come close to the happiness about the cure. I was diagnosed with stage three inflammatory breast cancer. The chances that I would survive were very, very small. But survive I did, and, as another cancer patient once said to me, “Today is a great day to be alive.”

This is one such story: it’s the e-patient awakening of a long-time personal friend of mine. Facing a painful medical crisis, she asked questions and carried out research that revealed options no one had told her about. By becoming an e-patient, she’s changed her future.

And what fascinates me, as we plan the new world of participatory medicine, is this: How does this awakening happen? What are the pivotal moments?

I met Elyse Chapman almost twenty years ago, on CompuServe’s Desktop Publishing Forum. In a very real sense, that was an online empowerment community: rather than taking the often-inadequate answers provided by software vendors, “we the people” banded together to talk about what WE needed to know.

A few years later Elyse and I met at a desktop publishing convention, where we cut costs: I shared a suite with Elyse and her husband Bruce. They lived near LA. Eight years ago they adopted their son Ben and four years later moved to Iowa.

Last August, Bruce was driving artwork to the printer at 6 a.m. for Elyse’s employer when over the hill came a pickup truck on the wrong side of the yellow line. He died instantly. Elyse is now sole support for herself and Ben.

Last month, experiencing extreme, out-of-the-ordinary cramps, she learned she had a large abdominal mass and would need a hysterectomy, major surgery that would require 6-7 weeks out of work. A strong woman (good Midwestern stock), she was willing to do whatever she needed to medically: she can handle it. The original finding was a 4″ mass, requiring open surgery since the docs said there was no way to tell whether they’d find cancer.

Elyse is familiar with my story and asked that fateful question faced by people with a critical diagnosis: “Where do I start?” She wanted to explore her options.

Fully supporting whatever her choice would be, I let her know about my own kidney surgery, in which a kidney with two large protruding tumors (attached to surrounding tissue) was removed through small slits, not the “open” nephrectomy that would have required 5-6 weeks recovery, like her proposed open hysterectomy. I asked if she’d like to explore such options.

While never once questioning her medical team, she agreed that would be good: not only is she sole support for her family, she’s a principal source of income for the small business that employs her.

Charlie Smith, M.D., is a member of our working group, and volunteered to talk to her. Charlie writes for the eDocAmerica blog, and he was “Doc Tom” Ferguson’s own physician, during the time when Tom was an e-patient himself, collecting extraordinary information that led to his outlasting his multiple myeloma prognosis by more than a decade.

As Elyse’s story unfolded in the next two weeks, I watched closely: it was my first opportunity to witness the birth of an e-patient, before my eyes. And as it unfolded, I experienced wonder and then joy at the process.

Later this week I’ll offer my thoughts. But first, here’s the post Charlie co-authored with Elyse on his blog. Please read and ask yourself, what’s unusual about this story? What happened here? What moments of realization occurred? What altered the outcome?

A Patient with a Uterine Mass:
The Case for Becoming an e-Patient

This article was co-authored by Elyse Chapman, who became an e-patient through the following process:

I recently became acquainted with a woman in Iowa, Elyse Chapman, who was concerned about her “fibroids”. Elyse was scheduled for a hysterectomy because of a very large, mass, probably a uterine fibroid, a benign but often problematic tumor of the smooth muscle fibers of the uterus. She had problems with excessive painful cramping, bladder pressure and a sensation of swelling and bloating in her abdomen.

A CT scan was ordered and showed a mass either on the ovary or uterus. The mass was so large that her doctors wanted to make sure that this was not a malignant tumor of the uterus or ovary. They had scheduled a total hysterectomy via exploratory laparotomy in 3 weeks and Dave was “consulting” with his online friends to see if anyone knew of a patient group with whom she could collaborate to see if there was an alternative to major surgery.

I volunteered to help. Shortly thereafter, I received an e-mail from Elyse and then gave her a call. I heard more details about her history, learned that she had lost her husband recently, and as a single parent, felt very shaky about the prospects of recovering from major surgery without help at home. She wondered why her doctors were so focused on performing a total hysterectomy and why she wouldn’t be a candidate for a laparoscopic approach. She also wondered if she really even needed to undergo surgery now, or could she safely wait and watch for a time.

Unable to determine for certain that an alternative approach was feasible in her case, I encouraged her, at the very least, to become more assertive about getting answers to her questions: If she wasn’t a candidate for laparoscopy, why not? I told her I’d do some further research about this and get back in touch with her. I looked this up on the internet and then sent her this e-mail:

I looked at some sites on laparoscopic hysterectomy. Here is one I thought was good:http://www.ohanlan.com/laparoscop.htm From what I can tell, it should be possible to remove even a large uterine mass via laparoscopy.Good luck getting an answer on this that makes sense to you. Let me know if I can help any further.

Elyse communicated directly with a nurse at the above site and it bolstered her belief that it may not be necessary to undergo a total abdominal hysterectomy. She communicated this to her doctors in Iowa who were still uncomfortable exploring alternative options. So, she sent me the following e-mail:

http://www.google.com/search?hl=en&q=fibroids+ultrasound&btnG=Google+Search&aq=0&oq=fibroids+ul

Charlie, have you heard of this — nuking the fibroid with ultrasound while using MRI to view and target the waves? Just learned of it today. Seems to me that U of I is wanting to just yank everything out even though there’s no proof that this growth is malignant. Sounds to my laywoman’s brain like at very worst there’s a 50-50 chance of malignancy, yet they do not want to do a biopsy for fear of rupturing something that might be ovarian and malignant, causing easy spread of malignant cells.

What I don’t understand is how anyone can determine if it’s malignant without a biopsy, but obviously someone knows how to do that, because links in the above results say the ultrasound procedure works well for non malignant fibroids, which means that somehow there’s a way to determine malignancy or no without too much fuss. U of I insists that there is no better imaging method than the CT scan I had, but at least some of the above links state that MRI is better. Huh?? Who is right? Is this a case of “we only know how to use a hammer, so everything we see must be a nail” or maybe “we’re financially invested in [name your imaging method of choice], so we’re going to use and promote that”? Thoughts, please?

Well, truthfully, I had not heard of this technique, so I did some additional research and found that the number of sites offering the procedure were limited, but sent these to her, with some additional links from the internet. In addition, this e-mail string reminded me that an increasing number of doctors and patients are opting for uterine artery embolization. I mentioned this, and she e-mailed me back that she was unable to find links for this procedure that I mentioned.

Here is my reply to her:

I should have used the “correct” term: uterine artery embolization.

This is another very reasonable alternative for you to consider, maybe even more realistic than the ultrasound approach.

After several more fax and phone exchanges between Elyse and the above physician in California, and phone exchanges with the physicians in Iowa, Elyse underwent an ultrasound examination that confirmed a large, single uterine fibroid about 6 or 7 cm in diameter. The Gynecologist/Oncologist in California felt that surgery was entirely optional at this point, noting that Elyse would likely experience shrinkage of the mass following menopause within a few years.

She is still in the process of finalizing her decision whether to proceed with a laparoscopic hysterectomy or take the “watch and wait” approach but is certain of one thing: she is NOT going to proceed with the scheduled total abdominal hysterectomy.

So, that is where we stand. But, what is the point? Well, the HUGE point is, Elyse is no longer content to blindly follow her doctor’s suggestions. Whereas they suggested she undergo a major surgical procedure, they didn’t even mention two significant new, less invasive procedures that might well be appropriate for her to consider, and did not give her clear information to consider the option of just watching and waiting.

The other point of the story is that a wealth of information is available on the web, but patients often need encouragement to seek it, and help interpreting it and applying it to their own situations. Peer support groups on line are one way to accomplish this and finding an interested, available physician to serve as an “e-patient advisor” is another way.

Either way, it is a good example of how patients are moving into the e-patient revolution and, through this process, the health care system is changing. In the meantime, join me in hoping Elyse soon finds the perfect solution for herself and has a great outcome.

So there you have it. Clearly, Elyse took matters into her own hands, even though she was prepared to do whatever her docs told her was necessary.

What do you see in this story? What happens in the awakening of an e-patient?

My thoughts (and a sequel) later this week. First, your turn: Discuss.

I am a 12-year leukemia survivor and very grateful to the ACOR community members who helped me numerous times along the way.

I have dedicated my life to creating community online and also, in a supplementary way, on radio. But my concept of community is a bit different. I believe it should not be seen as patients doing their own thing because doctors didn’t either listen to them or give them enough time – or lacked knowledge. I believe patients, caregivers AND specialists/researchers can easily be in ONE community together toward a common goal of better health for current patients AND future ones.

If you look at my little home-grown site, www.patientpower.info (with generous support and cooperation from the nation’s top medical centers AND their patients), we have brought together inspiring patients and renowned experts in a dialogue. In a few weeks we will add P2TV, much like CNN’s I-reports where patients will send in videos of their stories and also their questions. I am hopeful it will take off. And I am actively working to partner with community folks like Trusera and medhelp.org to form a union, in Health 2.0, of patients AND health care professionals who have devoted their lives to those same health concerns.

As an aside, I know the M.D. Anderson docs read patient comments on ACOR lists. They often know what a patient like me is saying BEFORE I come to see them. So the phantom community of patients and docs has been there a long time. Now I am working to make it all transparent.

Here are our current top 5 programs that illustrate patients and doctors working together:

1. A Team Approach to Treat Advanced Lung Cancer

2. Robotic Myomectomy: Treating Uterine Fibroids While Preserving Fertility

3. Advances in the Treatment of Bladder Cancer

4. Cell Phones & Brain Tumor: Should You Worry?

5. Cancer in Young Adults

(Note from Susannah: Take the time to listen to a few of these shows — they are a high-quality example of the long tail of podcasts. Big extra points from me for posting not only the full-length audio but also a PDF of the transcript.)