Posts tagged: medicine
Klint Finley
I’ve linked to research before casting doubt on the efficacy of “brain training” games and software (other than double n-back). But some new research reported by the MIT Technology Review is more promising:
Cancer survivors sometimes suffer from a condition known as “chemo fog”—a cognitive impairment caused by repeated chemotherapy. A study hints at a controversial idea: that brain-training software might help lift this cognitive cloud.
Various studies have concluded that cognitive training can improve brain function in both healthy people and those with medical conditions, but the broader applicability of these results remains controversial in the field.
In a study published in the journal Clinical Breast Cancer, investigators report that those who used a brain-training program for 12 weeks were more cognitively flexible, more verbally fluent, and faster-thinking than survivors who did not train. […]
“This is a well-done study—they had not just one transfer test but several,” says Hambrick, who notes that many studies of cognitive training depend on a single test to measure results. “But an issue is the lack of activity within the control group.” Better would be to have the control group do another demanding cognitive task in lieu of Lumosity training—something analogous to a placebo, he says: “The issue is that maybe the improvement in the group that did the cognitive training doesn’t reflect enhancement of basic cognitive processes per se, but could be a motivational phenomenon.”
Full Story: MIT Technology Review: Brain Training May Help Clear Cognitive Fog Caused by Chemotherapy
See also: Dual N-Back FAQ
Klint Finley
The New York Times owns up to contributing to the crack baby scare:
This week’s Retro Report video on “crack babies” (infants born to addicted mothers) lays out how limited scientific studies in the 1980s led to predictions that a generation of children would be damaged for life. Those predictions turned out to be wrong. This supposed epidemic — one television reporter talks of a 500 percent increase in damaged babies — was kicked off by a study of just 23 infants that the lead researcher now says was blown out of proportion. And the shocking symptoms — like tremors and low birth weight — are not particular to cocaine-exposed babies, pediatric researchers say; they can be seen in many premature newborns.
The worrisome extrapolations made by researchers — including the one who first published disturbing findings about prenatal cocaine use — were only part of the problem. Major newspapers and magazines, including Rolling Stone, Newsweek, The Washington Post and The New York Times, ran articles and columns that went beyond the research. Network TV stars of that era, including Tom Brokaw, Peter Jennings and Dan Rather, also bear responsibility for broadcasting uncritical reports.
Full Story: The New York Times: Revisiting the ‘Crack Babies’ Epidemic That Was Not
Klint Finley
I found this interesting because I normally come down in favor of western medicines and treatments:
In the case of the diabetes epidemic, I really paid attention to the narrative of the disease as dictated by Western biomedicine and, in contrast, indigenous peoples of Western North America. And I learned that they are operating on very different narratives. Western biomedicine says diabetes is caused by Indian genes, poor diet & lifestyle, etc. To many tribal people, this is a very doom and gloom story–if diabetes is caused by bad genes, what can you do about it? It’s disempowering. It also shames and blames Indian identity. Not surprisingly, many medical interventions, like getting diagnosed and treated, are traumatic in their own way. Getting one’s blood drawn and scrutinized for glucose levels, for example, reminds many of having their blood scrutinized for tribal enrollment. It can be felt as another face of social control.
Many tribal people, in contrast, understand the diabetes epidemic as an expression of the generational trauma they’ve experienced. Things like European epidemics, Indian boarding schools, nutritional trauma, environmental degradation, and reservation life were really hard hits to Salish life and culture. And these wounds span generations. And this is cited as the cause of the diabetes epidemic in tribal communities. So in this sense, there is definite spiritual and cultural dimension in diabetes etiology with Salish people.
So you have these 2 ways of looking at diabetes: one focuses on genes & diet, the other addressing cultural wounds. So when you build a diabetes program based in a biomedical understanding and try to implement it in a community that sees generational trauma as the primary cause, the program will fail. However, if you create a tribal diabetes program based in their cultural understandings, then you can get somewhere. So that was the big lesson: know the mental models of who you’re working with, and meet the people where they are. Not where you are.
Full Story: Traditional Medicine, a Conversation with Renee Davis
The whole thing is worth a read.
Chris Arkenberg on giving new meaning to “body hacking”:
In what amounts to a fairly shocking reminder of how quickly our technologies are advancing and how deeply our lives are being woven with networked computation, security researchers have recently reported successes in remotely compromising and controlling two different medical implant devices . Such implanted devices are becoming more and more common, implemented with wireless communications both across components and outward to monitors that allow doctors to non-invasively make changes to their settings. Until only recently, this technology was mostly confined to advanced labs but it is now moving steadily into our bodies. As these procedures become more common, researchers are now considering the security implications of wiring human anatomy directly into the web of ubiquitous computation and networked communications.
Barnaby Jack, a researcher at McAfee, was investigating how the wireless protocols between implants and their remote controllers opened up potential vulnerabilities to 3rd party attacks. Working with instrumented insulin pumps he found he could compromise any pump within a 300-foot range. “We can make that pump dispense its entire 300 unit reservoir of insulin and we can do that without requiring its ID number”, he noted, adding that making the device empty its entire cartridge into a host’s bloodstream would cause “deep trouble”. Previously, independent security researcher Jerome Radcliff, a diabetic and insulin pump recipient himself, showed a crowd at the 2011 Black Hat Security Conference how he could wirelessly hack into his own pump to obtain its profile, then alter it in a way that would modify his prescription when sent back to the device.
Full Story: Big Think: Inviting Machines Into Our Bodies
Last year author Douglas Coupland predicted that within the next 10 years: “We will still be annoyed by people who pun, but we will be able to show them mercy because punning will be revealed to be some sort of connectopathic glitch: The punner, like someone with Tourette’s, has no medical ability not to pun.”
Turns out some researchers already think “bad humor,” including excessive punning, is a disease. MSNBC reports:
Witzelsucht (the Germans just have the best words for everything, don’t they?) is a brain dysfunction that causes all sorts of compulsive silliness: bad jokes, corny puns, wacky behavior. It’s also sometimes called the “joking disease,” and as Taiwanese researchers phrased it in a 2005 report, it’s a “tendency to tell inappropriate and poor jokes.” We’ve covered all sorts of strange disorders of the mind in earlier Body Odd posts: one disorder makes you believe your loved ones are strangers, another convinces you that your hand has taken on a life of its own. Now, we give you a brain disorder that actually causes a poor sense of humor.
William J. Broad, author of The Science of Yoga: The Risks and the Rewards, writes for the New York Times:
Hatha originated as a way to speed the Tantric agenda. It used poses, deep breathing and stimulating acts — including intercourse — to hasten rapturous bliss. In time, Tantra and Hatha developed bad reputations. The main charge was that practitioners indulged in sexual debauchery under the pretext of spirituality.
Early in the 20th century, the founders of modern yoga worked hard to remove the Tantric stain. They devised a sanitized discipline that played down the old eroticism for a new emphasis on health and fitness.
B. K. S. Iyengar, the author of “Light on Yoga,” published in 1965, exemplified the change. His book made no mention of Hatha’s Tantric roots and praised the discipline as a panacea that could cure nearly 100 ailments and diseases. And so modern practitioners have embraced a whitewashed simulacrum of Hatha.
New York Times: Yoga and Sex Scandals: No Surprise Here
(via AshleyB)
Broad goes on to discuss some of the studies linking yoga to sexual stimulation and speculates about how that could relate to some of the various guru sex scandals that have plagued yogis for decades.
Broad also recently wrote for the times How Yoga Can Wreck Your Body, an extremely interesting piece that’s made frustrating by its lack of comparisons between the number of injuries in yoga and the number of injuries in other types of strength training. But here’s a taste:
Black has come to believe that “the vast majority of people” should give up yoga altogether. It’s simply too likely to cause harm.
Not just students but celebrated teachers too, Black said, injure themselves in droves because most have underlying physical weaknesses or problems that make serious injury all but inevitable. Instead of doing yoga, “they need to be doing a specific range of motions for articulation, for organ condition,” he said, to strengthen weak parts of the body. “Yoga is for people in good physical condition. Or it can be used therapeutically. It’s controversial to say, but it really shouldn’t be used for a general class.”
(via Dangerous Meme)
See also:
The results of Geoffrey von Maltzahn et al. in their Nature Materials publication reveal that nanoparticles that communicate with each other can deliver more than 40-fold higher doses of chemotherapeutics (anti-cancer drugs) to tumors than nanoparticles that do not communicate can deliver. These results show the potential for nanoparticle communication to amplify drug delivery over that achievable by nanoparticles that work alone, similar to how insect swarms perform better as a group than the individual insects do on their own.
Scientific American: Learning from Insect Swarms: Smart Cancer Targeting
(via Social Physicist)
Jon Lebkowsky is a social media consultant and cofounder of the Society for Participatory Medicine. He was also the co-founder of FringeWare, Inc. and EFF-Austin, co-edited Extreme Democracy, and is a regular contributor to WorldChanging. You can read his blog here and follow him on Twitter here.
Klint Finley: Let’s start off by defining what “participatory medicine” is.
Jon Lebkowsky: There’s a good definition on Wikipedia:
Participatory Medicine is a model of medical care in which the active role of the patient is emphasized.” It can be patients coming together in communities dedicated to a specific disease or condition, or it can be patients being considered peers within treatment teams that are treating their conditions.
The Internet makes it more possible, in that patients can find much more information about their conditions online, and they can find each other.
You’ve been involved with online communities for many years, how did you get involved with participator medicine?
Through my relationship with Tom Ferguson. Tom was a participatory medicine pioneer. He had edited the health section of the Whole Earth Catalogs, and published a magazine called Medical Self Care. We started talking and hanging out in the early 90s - he found me via EFF-Austin. He could see the potential for the Internet to provide patients access to more and more information, and he had always advocated for patients to be as informed as possible, and to have a role in treatment… and do as much for themselves as possible.
He had a grant from the Robert Wood Johnson Foundation to do a white paper on e-patients (See e-patients.net), and he knew that blogs and social technology would be relevant. He wanted me to join his team of physicians and others because I was involved in the evolution of social technology, what some now call social media.
I started working with the e-patients working group and became a founding member of the Society of Participatory Medicine.
How long this movement had been afoot? I’ve read that things like this were going on as far back as the 80s in places like the WELL.
Yes, there’ve been a lot of patient conversations and communities over the years in various contexts. The WELL has always had an active health conference, and patient communities like ACOR have been around for a while.
Other than there being a lot more people involved now that the Internet has become mainstream, is there any big difference between what’s going on now and what was going on way back when?
In a way, yes. With higher adoption of the Internet, you have so many more patients getting active online. And the tools are evolving so that it’s easier to create contexts for conversation. Also, partly thru Tom’s work and the Society, and other orgs like PatientsLikeMe and the Health 2.0 conference, you have a lot more interest, activity, and potential for innovation. And there’s more information coming online, so patients can theoretically be better informed. There’s also new tools for people to manage their health records online, and track aspects of their health. More hospitals and healthcare professionals are starting to use social media to connect with patients and for community engagement.
We have a whole movement forming around patient demands for access to their complete health records.
Can you give any examples of “success stories” in participatory medicine - anything that really stands out? Like a situation where you could say “Wow, that recovery could never have happened otherwise.”
Dave deBronkart. He had 4th stage terminal cancer, is now in remission. If he hadn’t been an e-patient, he might never have found the treatment that made him so much better.
Here’s what the Wikipedia article about him says:
His kidney was removed laparoscopically and he was treated in a clinical trial of high-dose interleukin-2 (HDIL-2), ending 7/23/07, which was effective in reducing the cancer, although his femur ultimately broke from damage caused by the disease. Visible lesions on follow-up CT scans continued to shrink for a year and have been stable since, and are presumed dead.
He learned of the treatment through his e-patient activiites and research. No one had told him about it. If a healthcare provider can’t offer a treatment, they don’t necessarily know about it or tell you about it.
Dave deBronkart aka E-patient Dave/em>
Is there a downside? Increased “cyberchondria,” or decreased trust in physicians?
Jon L. Part of the power of participatory medicine is in patients collaboratively researching and discussing various treatments. More powerful than a single source of information. There’s a potential down side - a physician has a different context for assessing information, and may make different judgements. But it’s good for patients to be more informed. For the physician, there can be an issue of having to spend more time with patients explaining why something they’ve found online might be inaccurate or inapplicable.
Physicians who believe patients should be empowered can be pretty good about that, though.
And there are physicians who don’t assume they necessarily have the answers, and are very willing to listen to patients who’ve been researching, and consider what they have to say.
The patient has a strong vested interest in outcomes, and will sometimes dig more deeply and thoroughly than the healthcare professional has time to do.
Here’s another downside to consider: some patients may become more knowledgeable about their conditions than their doctors. There’s a tendency for people, and I’m as guilty of it as anyone, to sort of double-down on their position if their expertise is questioned- especially if that expertise is questioned by an amateur. A physician might not want to admit they were wrong about something and their patient, who might not have ever even been to college, was right.
Yes, that’s definitely a concern. The solution is to create a culture where patients can be seen as peers. (Though not all patients will want that… many will.)
Not to be too personal, but have you been an e-patient yourself?
Jon L. Yes, but not with anything life-threatening, at least no so far. I have psoriasis and have researched it online, and was on a psoriasis email list for a while. I left it. My general sense was that the list was dominated by people who had strong feelings about what would or wouldn’t work - e.g. would vehemently oppose other patients who felt there was a potential to see results through changes in nutrition. I had a feeling they were being defensive - didn’t want to change their eating habits. So not all communities will be functional, or will work for all members.
I also had a problem with arrhythmia that seems to have been treated effectively by cardioversion and a round of drugs. I researched the drugs and decided I felt they were too toxic to continue, so I stopped after a year and a half. The cardio would have preferred I continued at least another six months.
Do you have any recommendations for potential e-patients for finding resources and communities, or places to avoid?
I would counsel proceeding with caution until you’ve felt your way into it, and got a good sense of the online landscape for your condition. It’s so easy to be misled, to get the wrong info. There are some communities that are well-established, and are the best places to go for specific conditions - like ACOR for cancer.
Also in researching your condition, remember that you’re not a physician or health researcher, so you don’t have the same context for assessing the information you find. Don’t assume your physician is wrong if you find contradictory information online.
You can get a sense of the landscape by reading e-patients.net and Journal of Participatory Medicine (the latter is the journal that the Society for Participatory Medicine started). There are also a lot of bloggers and tweeters in the e-patient space. Here’s a blogger on patient advocacy: Every Patient’s Advocate
Ed Bennett has resources for healthcare professionals.
Is there anything of note in the recent health care overhaul regarding participatory medicine?
It’s more of an insurance overhaul than a healthcare overhaul. I don’t think it has a lot of impact on what we’re talking about.
One thing specifically mentioned on the Society for Participatory Medicine’s web site is a need to address the digital divide’s impact on participatory medicine. Do you know of anything being done, or do have any ideas for solutions?
I don’t think there’s a specific project to address digital divide in this context. In fact, the community network / digital divide efforts in general seem to lack steam. Part of that is because Internet adoption is so high, it seemed that the issue was resolving as we had more and more ways for people to get online, and more incentives for them to do so. However I know there’s a significant number of adults who don’t have the kind of access they should, especially considering that so infrastructure for services is moving online.
State and smaller governments, for instance, are moving services online for the efficiency.
It’s not just a matter of access either, there’s also a matter of online literacy.
And when we get to the point where all healthcare data for everyone is available digitally, not just as an electronic health record but as a personal health record, only those who have the right degree of digital literacy will be able to have that as a factor in managing their health. To me the digital divide is more about knowing how to use computers than actually owning the hardware, so I’m with you 100%.
Metaverse One’s augmented reality anatomy education app
Bruce Sterling, in the State of the World conversation you moderated, suggested the possibility that individuals, informed by various web based instructional materials, could start doing amateur medical operations. It was clear that what he was talking about wasn’t what you were talking about in terms of participatory medicine at the time, but have you thought anymore about that scenario?
I think it’s pretty unlikely - he was seeing that as the ad absurdum where participatory medicine could go, but I think that’s a real misunderstanding (and I don’t think he seriously believed it would go there). That’s really not what “participatory medicine” and “empowered patient” is about… when we talk about being better informed and being part of the conversation about your own health, it doesn’t follow that anyone would necessarily want to be an amateur surgeon.
Maybe not in the global North, but I can imagine it happening elsewhere, where access to professional health care is worse. Or even here in the States if economic conditions worsen.
You have a point there, but it’s not really what participatory medicine is about.
I could imagine someone learning how to do just one or two particular procedures really well and just doing doing those.
We are near a point where only the elite can afford adequate care. Yes, very possible.
Right, so the “participatory” in participatory medicine means more participating in the decisions, not doing surgeries.
Right… participating in the knowledge, and in the decisions.
Well, I think that about wraps it up. Do you have any closing thoughts?
My focus has always been on the Internet and its impact on culture, so participatory medicine is just one of a set of related interests. I’m still thinking about what’s really happening and how what’s happening in various sectors relate - participatory medicine to the changes in journalism and in politics, for instance.
Dr. Joe Rosen at the Dartmouth Medical Centre believes that within five years he’ll be able to graft extra limbs such as wings and tails to humans. According to a Guardian Unlimited article “When we have a limb amputated, our neural map of that limb gradually fades away; and if we gain a body part, our neural map expands accordingly.” Rosen says “If I were to give you wings, you would develop, literally, a winged brain. Our bodies change our brains, and our brains are infinitely mouldable.”
Link (via Thumbmonkey).
Update: It appears that as of Spring 2007 Dr. Rosen is now more focused on facial reconstructive surgery than these more fringe pursuits.
