Vice Mother Board reports on a report robotics job ads by Wanted Analytics:
So even if it seems more intuitive that robots should be taking over brick masonry, it also shouldn’t come as too much of a shock that robotics would also be in demand for health care. The first job of the robots is maintaining people, poetically enough. Still, the fact that Wanted found that 65 percent of robotics jobs were going toward health care is pretty surprising.
The robotics specialists are up to interesting things though. Physicians offices are looking for people to “design, develop, and analyze devices for the expansion of the image guided robotics program for minimally invasive procedures and surgery,” and assist in the use of those programs.
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.
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.
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.
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.
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%.
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.
BARBARA EHRENREICH: OK. This book could be called, you know, “What I Learned from Breast Cancer to Help Me Understand the Financial Meltdown.”
But I was diagnosed about eight years ago and started reaching out, as you would do, naturally, to find support and information on the web and all that sort of thing. What I found was very different. What I found was constant exhortations to be positive, to be cheerful, to even embrace the disease as if it were a gift. You know, if that’s your idea of a gift, take me off your Christmas list, is my feeling. And this puzzled me. But it went along with the idea that you would not get better unless you mobilized all these positive thoughts all the time, which, by the way, I’m happy to tell you, there’s nothing to that. I mean, there’s been sufficient scientific research now that we know that your mood does not, you know, dictate whether you will get better or not. But, you know, imagine the burden that is on somebody who’s already suffering from a very serious disease, and then, in addition, they have to worry about constantly working on their mood, you know, like a second illness.
AMY GOODMAN: So, talk about the research. I think that’s going to surprise people, what you just said. I mean, years ago, you were in biology. You were at Rockefeller University.
BARBARA EHRENREICH: Oh, yeah. No, I—and here it finally came in useful. I think there’s a widespread idea—it sounds so familiar that, you know, you would, you know, just let it go right by you—which is that your immune system will be boosted if you are thinking positively. Well, there’s not a whole lot to that. There’s not a whole lot to support that. And furthermore, more to the point here, it’s not clear that the immune system has anything to do with recovery from cancer or with whether you get it in the first place. Now, I had—I guess I had kind of accepted those things, too. But that is the ideology, though, that you find in so many other areas of American life, too, that if you—you can control things with your mind, if you just have the right thoughts and attitudes. There is nothing in the material world that’s causing your problem; it’s all within you.
SHARIF ABDEL KOUDDOUS: And how did this ideology, this positive thinking movement, become so pervasive in American society? You document its rise in the culture.
BARBARA EHRENREICH: Yeah, well, I go back to the nineteenth century, because I’m always interested in history. But it really began to take off in a very big way in about the ’80s and ’90s, because the corporate world got very interested in it, got interested in it during the age of downsizing, because it was a way to say to the person who was losing his or her job, just as you would say to the breast cancer patient, “This is in your mind. You know, you can overcome this. If you—if something bad has happened to you, that must mean you have a bad attitude. And now, if you want everything to be alright, just focus your thoughts in this new positive way, and you’ll be OK.”
I can’t tell you how many times I have read people who have lost their jobs in this recession in the newspaper saying, “But I’m trying so hard to be positive.” Well, maybe there’s no reason to be positive. Maybe you should be angry, you know? I mean, there is a place for that in the world.
As the United States debates how to overhaul its health-care system, arguments have become increasingly outlandish — perhaps none more so than former vice-presidential nominee Sarah Palin’s assertion that the Obama administration plans to implement state-sponsored “death panels” to determine whether the elderly and infirm deserve life-saving medical treatment. Writing in Wednesday’s Wall Street Journal, Palin doubled down on her claims, saying that though “establishment voices” dismissed them, they nonetheless “rang true for many Americans.”
Of course, the U.S. government has no plans to “pull the plug on grandma”; the claims were false and the provision that sparked the rumors – a measure providing for free advice on how individuals can create living wills to inform their doctors and families what kind of end-of-life care they want — was removed from prospective legislation, just in case. But Foreign Policy took a close look around the world, in places where something akin to death panels is alive and well. […]
In 1999, as governor of Texas, former U.S. President George W. Bush signed legislation giving medical professionals an unprecedented level of autonomous power and creating perhaps the country’s only example of a “death panel” in action. […]
So, what about literal death panels? Fifty-eight countries still use the death penalty today, and they have a broad range of trial, appeals, and execution processes. The United States and Japan are the only OECD countries that still execute criminals for the crimes of murder and treason. (Other countries have not outlawed it outright, but no longer apply it.) Both have extensive review and appeals processes, and take years between conviction and execution. And, in both, the country’s Supreme Court is essentially the highest-ranking “death panel,” the last recourse for those looking to overturn their verdicts or commute their sentences.
Beginning in the Carter years, the Democrats later called neoliberals supported the deregulation of infrastructure industries that the New Deal had regulated, like airlines, trucking and electricity, a sector in which deregulation resulted in California blackouts and the Enron scandal. Neoliberals teamed up with conservatives to persuade Bill Clinton to go along with the Republican Congress’s dismantling of New Deal-era financial regulations, a move that contributed to the cancerous growth of Wall Street and the resulting global economic collapse. As Asian mercantilist nations like Japan and then China rigged their domestic markets while enjoying free access to the U.S. market, neoliberal Democrats either turned a blind eye to the foreign mercantilist assault on American manufacturing or claimed that it marked the beneficial transition from an industrial economy to a “knowledge economy.” While Congress allowed inflation to slash the minimum wage and while corporations smashed unions, neoliberals chattered about sending everybody to college so they could work in the high-wage “knowledge jobs” of the future. Finally, many (not all) neoliberals agreed with conservatives that entitlements like Social Security were too expensive, and that it was more efficient to cut benefits for the middle class in order to expand benefits for the very poor. […]
Instead of the updated Rooseveltonomics that America needs, Obama’s team offers warmed-over Rubinomics from the 1990s. Consider the priorities of the Obama administration: the environment, healthcare and education. Why these priorities, as opposed to others, like employment, high wages and manufacturing? The answer is that these three goals co-opt the activist left while fitting neatly into a neoliberal narrative that could as easily have been told in 1999 as in 2009. The story is this: New Dealers and Keynesians are wrong to think that industrial capitalism is permanently and inherently prone to self-destruction, if left to itself. Except in hundred-year disasters, the market economy is basically sound and self-correcting. Government can, however, help the market indirectly, by providing these three public goods, which, thanks to “market failures,” the private sector will not provide.
It’s entirely reasonable to think that some, maybe even most, of the respondents who agreed that government should stay out of Medicare may have meant one of the following: a) the government should privatize Medicare b) that the government should leave Medicare alone and not make any changes to it.
And before I go about demonstrating how, sadly, easy it is to prove the dumbness dragging down our country, let me just say that ignorance has life and death consequences. On the eve of the Iraq War, 69% of Americans thought Saddam Hussein was personally involved in 9/11. Four years later, 34% still did. Or take the health care debate we’re presently having: members of Congress have recessed now so they can go home and “listen to their constituents.” An urge they should resist because their constituents don’t know anything. At a recent town-hall meeting in South Carolina, a man stood up and told his Congressman to “keep your government hands off my Medicare,” which is kind of like driving cross country to protest highways.
I’m the bad guy for saying it’s a stupid country, yet polls show that a majority of Americans cannot name a single branch of government, or explain what the Bill of Rights is. 24% could not name the country America fought in the Revolutionary War. More than two-thirds of Americans don’t know what’s in Roe v. Wade. Two-thirds don’t know what the Food and Drug Administration does. Some of this stuff you should be able to pick up simply by being alive. You know, like the way the Slumdog kid knew about cricket.
Eh Dah Zu, a petite, 24-year-old woman, peeled back layers of white plastic and cloth wrapped around a sugarcane stalk – a prop simulating bone, muscle and skin – before cutting it with a thin cable saw to simulate an amputation.
The exercise, part of a trauma skills workshop in eastern Burma, was a stark reminder that there are no doctors or hospitals in this war-ravaged sliver of mountainous jungle near Thailand, where ethnic minorities have resisted the Burmese army for 60 years. The country’s military junta provides little health care, or access to international humanitarian groups for an estimated 500,000 displaced villagers, many of whom suffer from rampant malaria, malnutrition and one of the world’s highest rates of land-mine injuries.
In response, Burmese refugees in Thailand developed a unique program, effectively sneaking health care into their own country: A network of tiny mobile clinics now dot eastern Burma, where medics like Eh Dah Zu carry medical supplies in backpacks, walk for weeks through remote jungles and risk capture and injury to reach patients.
That’s great. Except for one thing, which the article completely misses: You won’t find too many people in their middle ages or older in this category. Why? Because they can’t get health insurance. America’s health-care system makes it all but impossible for an older worker to try something new.
Even younger startup owners who are relatively healthy and have insurance are just a half-step from disaster. The insurance industry is in the business of not paying claims whenever possible, after all, and health insurers are working hardest to find ways not to cover people who might get sick even as they deny as many claims as possible from people who’ve been paying premiums.
The day we have national health care is the day that we unleash a wave of entrepreneurship the likes of which we’ve never seen before. That’s one of the best reasons for moving toward such a system.
“If your heart was failing, how far would you go to fix it? Authorities say John Parsons, 57, of Oak Park stole the identity of a mentally disabled friend to pay for heart bypass surgery at Northwestern Memorial Hospital in Chicago in 2007. Parsons allegedly racked up about $350,000 in medical expenses billed to the friend’s Medicaid account.
It was not until copies of the bills started arriving at the Joliet home of Phillip Johnson that police said his live-in caregiver discovered the alleged scam. Parsons admitted stealing Johnson’s identity after his arrest, police said. He is due in court Sept. 15 on two counts of aggravated financial identity theft, the culmination of an eight-month investigation by Joliet police and the Will County state’s attorney’s office. Bail was set at $2.5 million.
“Unlike credit-card fraud where you can go back and seize that toaster or LCD television they bought, how do you go back in there and get somebody’s heart?” said Joliet Deputy Police Chief Patrick Kerr. “This is the first time in my 12 years I’ve seen anything like this.”