Breaking News at Hematology Meeting - for Patients
Andrew Schorr is the founder of Patient Power, LLC, and shares this dispatch, his second for e-patients.net:
I had a whirlwind weekend at the Moscone Center in San Francisco where I broadcast five and a half hours of live interviews with leading hematologists and hematologist/oncologists on the latest news in a variety of chronic conditions. The audience was patients who could ask questions by calling our studio or via email. Read more
“When physicians are ready to promote patient empowerment / engagement, what do we want them to do?”
Ted Eytan has a post by this name. It’s a question asked of him by Ann Barber, MD. I couldn’t be happier!
His post and the comments have gotten lively. I posted about Chapter 2 of e-Patients: how they can help us heal health care, which includes the seven preliminary conclusions. Ted replied:
Chapter 2 is a great call to action! In a way, finding that place in the world as a physician in (name your city) where you can support Health 2 is much like finding a doctor - word of mouth. There’s really no specialty society called “American Academy of Participatory Medicine.” Or is there? Or should we create one? Virtually? With its first brunch in DC this year?
Jen [McCabe Gorman] are you listening?
I may network some around this at Health 2.0.
Game on?
An e-Patient Hero Leaves Us
Most of us know Randy Pausch from his video lecture “Achieving Your Childhood Dreams”, taped at Carnegie Mellon as part of their “Last Lecture” series. His hope and optimism in light of a crushing diagnosis brought millions up short as they examined their lives through the lens of this great man at the end of his short life. What you may not know is that Randy was an e-Patient. He was engaged in his own healthcare to the very end and shared his journey freely with the world.
The Two Toms
Our dear friend, our brother, our hero, the inimitable Doc Tom, died on Good Friday 2006. Even though his untimely death came as a shock, Tom Ferguson had already far outlived the projections at the time of his Myeloma diagnosis over 15 years before. July 8 is Tom’s birthday.
Two centuries earlier, another Tom taught an important lesson about an empowered citizenry. Thomas Jefferson said, “Whenever the people are well-informed, they can be trusted with their own government.” We don’t need to be ruled by monarchs or dictators. We can join together to govern ourselves.
In this century, Tom Ferguson taught us that whenever the people are well-informed they can be trusted with their own health. We don’t need doctors or health systems to rule our bodies. He envisioned health as an equal partnership between “e-Patients”, each other, and the professionals and systems that support them in their health.
Psych Central in Time’sTop 50
Congratulations to our own John Grohol, CEO & Publisher of Psych Central, which has just been named one of the 50 best websites by Time magazine!
(Check out the rest of the list. I’m having fun reading up on food ingredients on Zeer.)
Diabetes Reloaded
Apparently it is video week on e-patients.net! Amy Tenderich of DiabetesMine released this call-to-arms yesterday:
But it’s not really a call-to-arms for e-patients.
In memorial: e-Patients Have Lost an Important Leader
On Sunday, May 25, 2008, The Sojourner died. She was perhaps one of the most active and loved e-Patient users of the virtual world Second Life. In the real world she was Karen Gans, a stroke survivor, mother and wife. She was 57.
I came to know her through my work with patients on the Braintalk.org stroke discussion board and then adopted her in Second Life as an inspiration and mentor. She probably had the most positive attitude I’ve ever encountered. She worked tirelessly to bring people together to help each other and overcome their problems. Her main interest was stroke, and she was a driving force behind Dreams and Shockproof, sites in Second Life that have become incredible resources for those with physical and cognitive disabilities. Through “in world” challenges she helped people to exercise their minds in a supportive and caring setting. She was constantly seeking resources to help people overcome the challenges of stroke and brain injury and continued to be active on the Braintalk stroke bulletin board as well as Second Life. She was interviewed for print and radio media, and spoke at symposia. Her disembodied voice was soothing and authoritative. We often joked that she should have her own radio show.
She seemed to know everyone and everything “healthcare” in Second Life. She knew who was up and who was down, and how to help. As my colleagues and I began to develop ways to test the impact of this virtual world on health and wellness, Karen was there to advise and encourage us. I was not surprised to learn that she had both masters and doctorate degrees and had been involved, with her husband, in program development and research with handicapped children prior to her stroke. Those skills in combination with her nurturing attention to our fledgling efforts made her such an important contributor to our team. In fact, I have to admit, after the news of her death finally hit home, I felt like an orphan. I will miss her, and my heart goes out to her family and friends.
Two Views on e-Patients, and the Doctors who See Them
In November 2007, Scott Haig, MD, an orthopedic surgeon and medical columnist for TIME, wrote an article for the magazine called “When the Patient is a Googler”. He described a patient of his he called Susan, whom he felt was emblematic of patients who research important aspects of their own health issues (and background information about their doctors). Haig writes:
“Susan had chosen me because she had researched my education, read a paper I had written, determined my university affiliation and knew where I lived…
Every doctor knows patients like this. They’re called “brainsuckers.” By the time they come in, they’ve visited many other docs already — somehow unable to stick with any of them. They have many complaints, which rarely translate to hard findings on any objective tests. They talk a lot. I often wonder, while waiting for them to pause, if there are patients like this in poor, war-torn countries where the need for doctors is more dire.
…Susan had neither the trust of a nurse nor the teachability of an engineer. She would ignore no theory of any culture or any quack, regarding her very common brand of knee pain. On and on she went as I retreated further within.
Susan got me thinking about patients. Nurses are my favorites — they know our language and they’re used to putting their trust in doctors. And they laugh at my jokes. But engineers, as a class, are possibly the best patients. They’re logical and they’re accustomed to the concept of consultation — they’re interested in how the doctor thinks about their problem. They know how to use experts. If your orthopedist thinks about arthritis, for instance, in terms of friction between roughened joint surfaces, you should try to think about it, generally, in the same way.”
The core of his article seems to be that the favorite patients of this type of doctor are those who just trust them or those who at least have the decency to think in the same way the doctor does, who agree with the doctor for their own reasons.
In response, Kaiser pediatrician and writer Rahul K. Parikh, MD, penned “Is there a doctor in the mouse? Arrogant doctors criticize their patients who go online to research ailments. But they’re wrong. The best health sites are a boon to patients and doctors alike” this month at Salon.com. Dr. Parikh offers an inspiring look at how e-patients can help heal our healthcare system:
“The medical establishment, in fact, has taken way too much time to understand that the Internet is a disruptive innovation that has overturned the status quo. It has leveled the playing field between expert and novice — in this case, doctor and patient. While some doctors like Haig may find that challenge threatening to their status as an expert, the Web is now providing the kind of information doctors need to be aware of if we want to continue to be good at our job, and the kind of trends that can help patients be smarter and healthier.”
Like me, this pediatrician is happy when his patients are online:
Patients who, prior to a visit, consult information online can better share in the decision-making process with their doctor. Afterward, they can go online to find information that reinforces their decision or introduces them to viable alternatives.
Dr. Parikh urges physicians to incorporate the health internet into their practice routine:
Today, there are many accurate, high-quality health sites, and doctors should make it a standard practice to recommend them to each and every patient. Besides reducing the randomness of a Web search, this can reinforce a physician’s advice during a visit, which is especially helpful, as studies show that patients typically remember no more than half of what their doctor tells them.
Obviously, my perspective is similar to Dr. Parikh’s, and I appreciate his articulate response to the resistance that too many e-patients still encounter. Patients and doctors alike have much to learn as we embark on healthcare in the 21s century.
We live in a time of rapid tectonic shifts in what it means to be a doctor and what it means to be a patient. I’m not surprised that there are clashes of ideology and practice. Our labyrinthine, barnacle-encrusted healthcare system resists change. So do our social structures that have lasted for millennia.
But already many e-patients and many e-doctors are actively enjoying a new way of relating, rooted in mutual respect and open access to health information.
I believe encouraging and equipping patients to search for health information is central to being a good doctor in the 21st century.
Google Health’s Adam Bosworth Leaves
In a surprising move that caught many in the industry off-guard, titan Google announced that the leader of its stagnant online health initiative has left the company. You can read the full story over at Reuters
Bosworth, better known for his software engineering accomplishments, probably was not the best choice for this leadership role to begin with. A guy with a sharp mind and wit to follow, his expertise was more technical in nature than necessarily having the wheeling and dealing skills to bring together all of the players in U.S. healthcare. Which is a much larger challenge than I think even Google realizes.
Bosworth may have been stymied, too, by Google itself. With such a huge corporate play into this area, it’s hard to do something different enough to establish it as “Google-centric” and valuable to the average Internet user. While Google values how quickly it can develop and nurture Internet technologies for tools, it hasn’t been able to bring any Google magic to this area whatsoever.
Google’s only current health offering, via Co-op, is a simple tagging application that is very people-work intensive. Is this really the best technology can offer us, having thousands of random people going around “tagging” content? Might as well have monks transcribing health pages in their monastery.
The previews of Google’s online personal health record didn’t light any fires under anyone in the PHR world. The only reason people get scared when Google enters a market is because of the vast people it brings with it. But only If it implements well. (You only need to look at the vast network of orphan Google products to see that everything it touches does automatically take off.)
Hopefully, Google will take Bosworth’s leaving as a sign. Get someone in there with deep and extensive healthcare knowledge and background to lead this effort. And do something a little more interesting than tagging health content or an online health record.
My Idea of Great: Health Data Geeks Convention
I was lucky enough to be invited to a “Data Users Conference” sponsored by the Health Information National Trends Survey/National Cancer Institute, which really should have been called Health Data Geeks Unite! If you have a moment, I highly recommend browsing through some of the presentations, particularly the following:
David Stinchcomb showed how isopleth maps can be used to smooth regional data into a lovely “weather map” connecting low belief in the risk of smoking with the reality of high lung cancer mortality rates. (If you like that kind of data mapping, check out Social Explorer.)
Jon Miller argued for the need for “biological literacy” since the 20th century was the “age of physics” and the 21st century will be the “age of biology.”
Michael Link reminded us to watch out for the effect of cellphone-only households on classic phone survey results. A snail mail survey found that 52% of cell-only respondents had been recently tested for HIV vs. 35% of landline respondents, for example. 40% of cell-only respondents are binge drinkers vs. 23% of landliners. (This was news to me since my colleagues in the political end of the Pew Research Center had found that cell-only respondents were politically akin to landliners. Watch this space for updates for the 2008 election cycle!)
Tenbroeck Smith said that the American Cancer Society call center handles about 1 million calls per year, while cancer.org handles about 20 million visitors.
My presentation focused on how e-patients are using the latest participatory media (Flickr, MySpace, YouTube, etc.) to document, advocate, educate, and illuminate their own health journeys.
white paper
e-Patients:
How They Can Help Us Heal Healthcare
