Update 3/21: For easier reference, I’m editing this to incorporate some goodies from comments below.
Here’s a little game that just might turn into something transformational.
Since I started learning about this world of participatory medicine, I’ve looked for patterns that can teach us something. (That’s what I do at work, in high tech – look for patterns that help understand and predict.)
After reading the e-patient white paper (you should if you haven’t), I started to notice ways that certain patients created great value, far beyond what their mortals docs could do alone. Notice the slogan at the top of this page.
Here’s a thought: perhaps Our patron saint Gilles Frydman has long said that some of the most potent e-patient specimens are health professionals who become patients themselves. Let’s collect some names.
For starters:
- Doc Tom Ferguson himself, founder of this group – a multiple myeloma patient who far outlived his prognosis
- Doreen Kossove, powerhouse pediatrician, the soul of her ACOR community, who just died last month after outlasting her leiomyosarcoma prognosis by a decade. (See Elizabeth Cohen’s CNN.com piece.)
- Ken Youner, retired MD who’s a vital and valuable contributor to my kidney cancer group on ACOR.
Additions submitted in comments:
- David Servan-Schreiber MD, PhD, author of Anticancer: A New Way of Life.
- Dr. Steven Fadem, MD. Being diagnosed with a deadly disease changed his practice of medicine. (Details below.)
- Diabetic docs cited by Diabetes Mine goddess Amy Tenderich:
- Dr. Steven Edelman of TCOYD / UCSD
- Dr. Irl Hirsch of Univ of Washington
- Theresa Garnero of UCSF
Your thoughts please? Other examples? Let’s collect ’em. And I’m callin’ ’em “d-patients” – a subset of e-patients.
One thing d-patients prove is that patient empowerment is anything but anti-doctor. Heck, sometimes it’s a doctor preservation movement.
Your turn: Names, please.
e-Patient Dave – I think this is very wise and points to the notion that having information is a good thing especially when coupled with empathy. Just last night we were talking as a family about how Alan (a pediatrician for those of you who don’t know us) was taught to “run to a code, walk to a seizure”. the idea was, if someone is coding they needed medical help NOW, but if they were just seizing, you needed to get there, but you could go at a normal pace. Then he watched me seize and it changed everything for him. Before that experience, he didn’t get how sick a patient feels afterwards or how scared family feels during. d-Patients have a lot of information (that we need when we’re their patients) AND first hand experience that is transformative.
Back to your question — I know a couple of d-Patients, but I’m not sure they are public about their conditions. Let me check before adding them to the list.
BTW — My seizure was an isolated instance, just after my cancer treatment. It was brought on by a blood draw gone bad. I’m totally fine now, but have a great deal of empathy for anyone who experiences seizures.
I just gave myself a big forehead slap for forgetting this one:
btw, Cheryl, your comment reminds me: as I’ve talked to people at conferences and in the real world this past year, one of my most reliable observations has been that people get radicalized when it gets personal.
When it’s your child, your spouse, your parent who’s in deep doo-doo, you care whether the system works now.
This is so different from the abstract maundering ponderings that I see most of the time, as people just masticate the complexity of it all, wondering how to fix it someday, and never get urgent about it.
This is part of why I say, about our movement, “Time is on our side.” Everyone’s time will come. If we do a good job of letting people know about our principles, there’s no question they’ll soon see its relevance.
Then I want us to have resources available for them, on our web site, or pointers to other great sites that enable patient participation.
Great post! I have been saying for many years that the most important ACOR members are doctors who have become patients or caregivers. All of a sudden they look at medicine in a totally different way. It becomes a much less internalized intellectual process and a much more human experience.
Those who have joined ACOR usually apply their clinical expertise to the fight of their life and it becomes pretty clear that it is much easier to become a true medical expert when you have studied medicine :-) Well, in fact this is only half a joke, because many ACOR members do know a lot more about their disease than almost all the docs that will treat them.
Online communities greatly benefit from the presence of a single doctor patient and can be changed forever as we see on the ACOR lists where Dr. Dee (Doreen Kossove) participated, with her exceptional ability to understand the most complex papers and her unique ability to guide patients. She was the ultimate facilitator of the transformative experience of many new ACOR members, from passive to engaged patients. Books could be and should be written about this phenomenon.
And we should promote the creation and maintenance of an international database, containing information about all these doctors.
I’ll give you one more name: Dr. Steven Fadem, MD. Read his early experience with an online community and how being diagnosed with a deadly disease changed his practice of medicine:
Dave, people don’t get radicalized when it gets personal. They just become rational.
Yes, I clearly swiped your whole ongoing conversation about doc-patients. :) When I posted that last night, I didn’t have the presence of mind to cite you, but yeah!
Re “rational” this would be a good time to synopsize your view of that subject. I remember a scholarly dissertation you posted a while back, about (I think) “rational ignorance”?
And I thought D-patients stood for those of us with diabetes… btw, there are some very “potent” diabetic physicians and medical professionals who’ve made a huge difference. For example:
– Dr. Steven Edelman of TCOYD / UCSD
– Dr. Irl Hirsch of Univ of Washington
– Theresa Garnero of UCSF
and so on. Thanks for the insightful post!
Not an MD (although a scientist par excellence), and perhaps a bit “pre-e,” but for those of us who hung on to his every word, Stephen Jay Gould and the amazing “The Median is not the Message.”
Besides the doctors turned patients, we should also recognize the amazing specialists of many *rare*? conditions who donate significant amounts of their time to provide medical guidance to patients in dire need of this info.
ACOR had the luck of having one of the world most well-known researchers of a specific leukemia on a list for over 10 years. Patients greatly benefited from his presence.
A quintessential d-patient is Dr. David Martz. Diagnosed with supposedly incurable ALS, he aggressively sought antibiotic treatment for Lyme borreliosis and babesia, contradicting common medical routine, and made a remarkable recovery. How many more misdiagnosed ALS patients are there?
His story is told in the documentary film “Under Our Skin”. His journal report, Motor neuron disease recovery associated with IV ceftriaxone and anti-Babesia therapy, is found in Acta Neurol Scand. 2007 Feb;115(2):129-31.
Hi Joel – thank you so much! How did you find us?? We’re always curious about how the word is getting out.
Also, what led him to suspect that alternative?
We have a possibly similar story in our archives from last June, about Trusera.com founder Keith Schorch.
One more question: in a case like this, where an ALS diagnosis is questionable, how would a doctor *rule out* Lyme disease?
Hi Dave,
I found e-patients when you cross-posted on thehealthcareblog. Then, I think I saw your name on a panel at SXSW. We didn’t make it to your session. How was it? I came here expecting a blog report.
It is always hard to know where to start when talking about Lyme disease. It has become almost entirely a political construct.
The best way to figure out what is going is to invest the two hours to watch “Under Our Skin”. You will probably recognize a potent mix of e-patient issues in the film, also. We are getting a start on our website seranogroup.org, too.
There is no good test for borreliosis. That’s part of the politics.
Dr. Martz knew Dr. Bill Harvey who was written up in Osler’s Web and became expert in borreliosis, hence Dr. Martz suspected borreliosis. MD contacts made it easier for Dr.Martz to get access to drugs than a typical citizen.
Frankly, response to antibiotics, good or bad, would be the only way for a misdiagnosed ALS patient to know they had borreliosis.
MUST READ
All, I’d never heard of the new film Joel mentioned, Under Our Skin: There’s no medicine for people like you. Quite a slew of award seals on the film’s site. Joel, do you know when it may be in theaters?
Check out the film’s YouTube channel. The stories look VERY much like the one told by Keith Schorch (linked in a previous comment). And I’m a slug for not having noticed Elizabeth Cohen’s piece about the movie for her Empowered Patient series on CNN last July.
> saw my name on a panel
This is funny, because the term e-patient is not synonymous with me; I’m one specimen, not the whole species, by a long shot, but you’re not the first to think “e-patient = Dave.” The excellent overcrowded e-patient session at SXSW was led by our John Grohol, one of the e-Patient Scholars Working Group, gathered years ago by our founder Tom Ferguson.
It’s not all about me, but hey, whatever spreads the word is fine with me – make me a human billboard. A poster child, if you wish.
—- Hey John, you’re a star – this e-patient fellow was looking for a report on your session at SXSW! I have a suggestion for you. :–)
How timely… Posted today on Huffingtonpost on Lyme borreliosis:
Lyme – emerging disease or hidden epidemic?
First I an honored and humbled by the mention of my name. I must let out a secret-the feedback I get back from my fellow kid-onc warriors is more valuable to me than anything. After the death of my beloved wife (from cancer of course) it has become a link to the purpose of life. It motivates me to keep up to date in the kidney cancer literature. If not some else on the list will get it right.
Ken Youner
EXPERIENCE FROM ITALY
Hi, as I wrote in my italian blog, Salute 2.0 (health 2.0), four years ago, Paolo Barnard – a famous italian journalist – thought that the Medicine and Healthcare could be redesigned by d-patient, the doctors who’re passed to the “other side”, and now know perfectly both medical science and suffering, having lived in other words on their skin pain, loss, anguish and the brutality of serious illness and treatment more extreme, but knowing better than anyone else the medical machine”.
The idea, first become a successful television program, Medical Nemesis, (RAI Educational, June 2005), and then a book, ‘On the other side’ (BUR Rizzoli 2006), even more appreciated by the public with 9 reprints, whose juice is the Decalogue to a Health more human ..
Not only, but as suggested at the first point of the Decalogue, on 6 September 2007 the Minister of Health, Livia Turco, settled the “Council of sick doctors” “, “cinical, who lived the experience of illness severe or disabling, which will be entrusted with the drafting of a plan to reform the Italian view of health”. Unfortunatly the Government changed few months later and, by now, the fairy story ended.
There is little doubt in my mind what knowledge of the system can do. This, along with what I will call a “NY or to be more specific a Brooklyn mentality” can go a long way. I am currently sitting in Houston Texas. I was here for 2 visits over the past 2 weeks. My work as medical director of ACTION TO CURE KIDNEY CANCER (www,ackc.org) requires that I spend a lot of time evaluating cutting edge kidney cancer research for ACKC. We are a totally volunteer group of kidney cancer survivors. Our goal is to raise awareness of kidney cancer, to get federal funding for kidney cancer research (currently we have been working for 4 years on getting funding through the Dept. of Defense and the Congressional directed medical research program. In addition we raise funds so that we can give research grants directly to kidney cancer researchers. We just recently gave 2 grants, one to a researcher at the NCI and one at Stanford University.
I contacted Dr. Ritsuko Komaki at the MD Anderson Cancer Center in Houston. I spoke with her about the possibility of treating the metastatic kidney cancer in the nodes in my chest with proton beam therapy. This form of radiation has been used to treat a number of different cancers in the chest, as well as prostate cancer and certain malignancies in children. The treatment is often used because it causes less collateral damage to surrounding normal tissue. However this has not been done to treat metastatic kidney cancer. I had a consult with Dr. Komaki and she felt that this treatment could br very useful for me. I also had a consult with Dr. Eric Jonasch of the GU oncology department-as I call him “the local kidney cancer maven”. He felt that pretreatment with a course of Sutent would be helpful to (hopefully) shrink the size of the tumor areas (there are 3 in my chest). After consulting with Dr. Komaki, she agreed. She felt that this would make planning the fields for the proton beam therapy much easier.
So here I sit in Houston in a rented apartment on a medication I had originally planned to try to avoid (as an avid cyclist and skier I felt that the side effects of fatigue and hand-foot syndrome could lead to a severe degradation of the quality of my life). However I think that the plan as outlined by Dr. Jonasch is a good one. I will await the 2-3 weeks of medication and then pray that I can start the proton beam therapy, which, will take about 2 months.
Without my being a d-patient e-patient, none of this would have happened.
I would like to make one correction (other than the spelling mistake of be) that the scientist we gave the grant to is at a branch of the NIH not the NCI.