NON-Practicing Patients
It took me a few days to digest what was troubling me with the New York Times Magazine article. The efficacy of the ACOR groups is based in part on the dual fact that patients and caregivers members of the online communities NEVER behave like they are replacing their treating physicians and NEVER practice medicine. At a maximum they provide to peers valid medical information, often difficult or impossible to find anywhere else.
That is a fundamental element of participatory medicine. All those involved, including the patient, are equal partners in the patient care. And they all must know their roles and the limit of what they can individually achieve. As Larry Weed explained:
The idea of “my doctor”, the all knowing graduate of a credentialed university medical school must be abandoned. In travel, we do not talk about “my pilot”, we talk about the airline system of which the pilot is only one part, and his role is sharply defined and rigorously monitored.
While e-Patients and e-caregivers fill-in many of the gaps in the continuum of care provided by the various health professionals, they do not replace the parts that work optimally and are never antagonistic, unless the care is sub-optimal. They certainly do not intend to practice medicine. Nonetheless, as informed patients, they can easily become highly efficient case-managers for their own illness.
Social DNA at 23andme: who owns your genome?
23andMe is a new personal genomics system that will have social features. Once your DNA is analyzed, you’ll be able to compare it with others’. People will be able to find each others by allele (genetic variation). Unfortunately, you have to shell out $999 for the kit and analysis, which looks at around 600,000 genetic variations. With a decent adoption rate, the company could have a robust genomic and phenotypic database, though it’s not clear from the article who would own the data and what costs and restrictions researchers might face if they wanted to dig into it. An article at Technology Review focuses quite a bit on personal use of the DNA data, and the social aspect of this particular implementation, but also on the question of h ow the data will be used. The company says it “will not sell genetic data to pharmaceutical companies, but it may sell access to the company’s pool of willing research participants or other fruits of its database.” In fact, the data will be quite valuable, and the cost of aqcquiring it will be covered by the users who pay to have their DNA analyzed - but are presumably giving up ownership of their own data.
According to the Technology Review article, the company also expects “a sort of grassroots research effort that mirrors the rising influence of patient-advocacy groups.”
If the trend attracts large enough numbers, people with particular diseases could come together to search their genomes for similarities. Or those who escaped a particular condition despite a high genetic risk could provide insight into lifestyle and other genetic factors that were protective.
We talked about just this sort of thing at a recent meeting of the e-Patients Working Group.
A cursory review of the 23andme web site didn’t reveal explicit information about how the company plans to use or monetize the data, or how the intellectual property question will be addressed. I would want to see much more about that before I would shell out $999 to pay for their analysis kit.
(Cross-posted from Weblogsky)
“Practicing Patients” (New York Times Magazine)
I haven’t dug into this yet, but I will. You?
Minnesota wrong kidney tragedy, part II
Important update: before reading, please see correction 3/23/08 to Tuesday’s original post. The basic issue is unchanged but in any sensitive case like this accuracy is vital.
I received a comment on Tuesday’s post from a doctor in the Twin Cities, Dr. Bill Utz.
Dr. Utz’s message evoked so much thought and feeling that rather than replying in a further comment, I’m replying in a second post.
Dr. Utz, first, I wish this weren’t email-like faceless blogging, because I’d welcome a chance to talk as live individuals. If you’d like to do that, let me know how to contact you, at epatientdave at comcast.net. I want to be sure both my respect and my intensity come across. …
E-patients might have prevented Minnesota wrong kidney tragedy
Corrected 3/23/08: The hospital does have online patient records, though they don’t include CT/MRI or mammogram results. See link and details below.
This one strikes close to home, landing a year after removal of my own cancerous kidney … plus, a year earlier, I lived 15 miles from this hospital. So this could have been me.
Article: Doctors remove cancer patient’s healthy kidney by mistake
Apparently, a few weeks before surgery somebody marked the chart wrong, saying the wrong kidney had the cancer. From that point on, things went exactly according to procedure. …
When the Patient is a Yahoo
There’s been a lot of talk about Scott Haig’s November article in Time, When the Patient is a Googler: Alan Greene wrote on this blog; it was a hot topic on the NY Times “Well” blog; and Susannah Fox said:
I’d love to hear what people think about the issues raised, but I also want us to notice the use of the term “googler” to describe the group we would call “e-patients” (and that Harris Interactive would call “cyberchondriacs.”)
And this, from Network World: When the patient is a Googler and the doctor is a pompous ass.
There seems to be a binariness to the conversation: some think patients should just mind their own business (i.e. stick to the listening side of the desk), others think patients have every right to mind their own business: be actively involved in researching and knowing their condition, and bringing things to the table.
What’s missing is the aspect of building an effective partnership. As a living specimen of the patient side of things, I have a couple of observations.
Trusted doesn’t mean accurate. Safe is almost certainly stale
I am sick & tired of the advice given to people looking for medical information on the internet. All the content evaluation guidelines say the same.
Look for sponsorship, currency, factual information and audience.
A recent CNN Empowered Patient entry states
“So if you’re trying to find medical information for yourself or someone you love, and you’re not lucky enough to have access to a professional research librarian, what do you do?“The Empowered Patient” assumes you already know the basics of good Internet searching: .gov and .edu sites are to be trusted, as are sites for major health centers (think MayoClinic.com) and health organizations (such as the American Cancer Society’s cancer.org).
Let me tear apart some of these guidelines because they so clearly represent guidelines from the last century.
The guidelines available on the “trusted” websites were all conceived between 1995 and 1999, when information available was entirely static. That was before anyone had written about the long tail, the wisdom of crowds, community intelligence, and e-patients. They all predate the introduction of social networking sites. In short they COMPLETELY miss the point of the current use of the internet, as a disruptive technology leading the democratization of medical knowledge by opening access to countless repositories of scientific information and fostering the growth of innovative medical online communities.
Once you have opened the Pandora box by letting the world have unhindered access to PubMed you cannot expect that people will be satisfied with the safe and stale information available from “patient-oriented” information websites prepared ala “Health 0.1″ by so many large medical organizations. The American e-Patients demand a lot more and they rightly deserve a lot more.
We, the e-Patients, do not want to read medical information from the trusted and vetted static websites. We need accurate and current information about our current medical problems. And with the explosion of new targeted therapies these problems are going to multiply, leaving almost any health professional unable to keep track of all the side effects of the therapies they prescribe. It is a trend I am noticing for a few years and it is clearly accelerating. In fact the acceleration is such that now it is almost a given fact that “trusted” static sites cannot produce web accessible pages containing the information we so desperately need.
An example is in order. RCC, renal cell carcinoma or kidney cancer, has an incidence of about 51,200 cases in 2007. It is a fairly uncommon cancer but it is treated by a large number of clinicians. Prognosis of RCC patients is still dire, with about 25% of patients diagnosed at stage IV and a 2-year survival for those patients at about 23%. 3 recent drugs have been added to the available treatments which until then were seriously deficient. The 3 agents are new targeted antiangiogenic agents (Sutent, Nexavar & Thorisel). 9 additional drugs are in the pipeline, in phase III trials. 5 are targeted therapies and 4 are immunotherapies.
Doctors treating RCC patients are suddenly faced with an exponential need for in-depth scientific information, even before large cohorts of patients have been treated for long periods of time. e-Patients have naturally started to fill in this growing gap. They ask daily their peers about a very wide array of side effects for each one of the newly approved antiangiogenic agents and are even able to conduct conversations about the potential benefits/risks of a treatment their doctor has recommended. These decisions are often made with the use of medical information newer than what they physicians have access to, unless they practice in a large and specialized oncology unit.
Just yesterday, a patient wrote to the ACOR group (with over 1,500 members) about a very unusual side effect. Acting on behalf of the RCC patient, I followed the advice from CNN:
There’s a lot of junk on the Internet. “It’s the wild, wild West out there,” says Alan Spielman, CEO of URAC, a company that certifies health Web sites. “You really have to be alert as you go through these sites.”
To get rid of the junk, use a search engine that looks only at reputable sites that have been vetted by health professionals. Dirline, run by the National Library of Medicine, is one such engine, as are medlineplus.gov and Imedix.com. Healthfinder.gov searches for information on government health Web sites.
I did look for information about the side effect in MedlinePlus (the current darling of those who are afraid of the unbridled medical internet). I did and couldn’t find anything. I went to the FDA site and read the entire official insert label for the antiangiogenic agent mentioned by the patient. No mention of that side effect! Of course because to be trusted and safe the information has to be written at 6 grade litteracy level! Still interested I went to the National Cancer Institute, the American Cancer Society and the American Society of Clinical Oncology websites. Searches in these 3 reputable sites didn’t produce a single result!
It turns out that only the sites who have licensed the Merimedex drug database have information about this rare side effect. And, of course, the 3 patients who responded to the inquiring patient, while I was spending my time trying to get an answer from the trusted and vetted sites. Thanks to their combined answers, the 4 now know that they must have their liver functions tested immediately following the development of this rare side effect. A prime example of the power of participatory medicine!
If presenting clear and current Health websites guidelines to the American public is important, it is the responsibility of the organizations who designed the original guidelines 1.0 to come up with the 2.0 version. HON, URAC & the NIH could lead the way. Just look at the HON Code. No social networking site could ever apply for certification. ACOR certainly cannot, since so much of the information given from patient to their peers is not authoritative in the classical way. ACOR doesn’t replace the doctor-patient relationship but unfortunately many patient to patient communications replace the non-existing communication between patients in urgent need of advice and doctors overwhelmed and unable to respond to their patient needs. But as I wrote in another blog comment, in 15 years, no one has ever reported a single “death by internet medical information”. Quite the contrary.
Flashback to 2001
Bowing to popular demand (OK, one person) I uploaded a PDF of the 2001 press release from the American Medical Association which suggested that Americans make a New Year’s resolution to “trust your physician, not a chat room” since the information found online puts “lives at risk.”
I distinctly remember seeing those words flash across my screen and knowing that I had to have my own copy of this artifact (much in the same way I printed out screenshots of early websites in 1994 — sadly, not capturing the good old that punctuated so many pages).
I incorporated the AMA release into my remarks at Health 2.0 as an example of an organization that was slow to adapt to the new realities of the information marketplace, hoping to inspire the VCs, pharma execs, advocates, and other health dot-com players in the audience to question their own assumptions, even as they forge ahead with cutting-edge solutions. I very much welcome debate — it’s why I gave the speech and contribute to this blog. But please also read my reports, since that’s where my real source material resides.
Patient 2.0
Check out this interview with Matthew Zachary, founder of ImTooYoungForThis (cancer resources for GenX and GenY).
Susannah Fox at Health 2.0
Video of e-Patients group member Susanna Fox at Health 2.0.
Susannah speaking:
Interview:
white paper
e-Patients:
How They Can Help Us Heal Healthcare
