As hospitals in nations hardest hit by Ebola struggle to keep up, desperate patients are turning to the black market to buy blood from survivors of the virus, the World Health Organization warned. […]
Blood from survivors, referred to as convalescent serum, is said to have antibodies that can fight the deadly virus. Though the treatment is unproven, it has provided some promise for those fighting a disease that’s killing more than half of those it has infected.
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.
“A multiple sclerosis sufferer who wants her husband to help her die has accused the Director of Public Prosecutions of ‘ cowardice’ for refusing to clarify the law on assisted suicide. Debbie Purdy hit out at Sir Ken Macdonald for failing to make clear under what circumstances someone would be charged for aiding the death of a terminally ill person.
When asked why she thought prosecution guidelines were unclear, Miss Purdy, of Bradford, West Yorkshire, said: ‘I think it’s cowardice to be perfectly honest. It’s the last taboo.’ The 45-year-old, who was diagnosed with primary progressive MS in 1995, said she hopes to travel to Switzerland or Belgium, where assisted suicide is legal, to end her own life when her pain becomes unbearable.
However, she is concerned that if her Cuban husband Omar Puente helps her to travel, he might be prosecuted. Under the 1961 Suicide Act, the crime is punishable by up to 14 years’ imprisonment. Miss Purdy yesterday launched a landmark legal case at the High Court in an attempt to force the Crown Prosecution Service to spell out exactly what actions would be taken.”
Imagine receiving a letter in your mailbox asking you to participate in a study for cancer research, and that your doctor didn’t mention anything about cancer during your last physical. This is what happened to 400 women in Maryland. According to the Baltimore Sun, ‘A state contractor tampered with Maryland’s cancer registry, a database used by researchers to track the disease’s impact, counting hundreds of patients as having cancer when they did not, according to a legislative audit released yesterday. The company, Macro International Inc., found in an internal investigation that data were deliberately altered between August 2004 and December of that year. The company fired the employee responsible for the cancer registry. State officials said that Macro employees apparently overreported the incidence of cancer to ensure that the database met standards set by a national certification association, which closely monitors registries to ensure that states have a complete count of cases.’ These letters were sent in 2005, and they’re just addressing it now.
If this can happen with a cancer registry’s database, imagine what could happen with someone’s personal health records. The argument for computerized records is simple. It will eliminate many errors that occur with paperwork, and will help emergency workers to assist a patient if the patient is unable to communicate. While this seems like a great idea in general, the issues of privacy, confidentiality, and abuses of the system lie in the back of many people’s minds. And for good reasons.
It’s not only our health records that are vulnerable. The WSJ Health Blog reports ‘In yet another example of the health industry mishandling private patient records, Blue Cross and Blue Shield of Georgia sent some 202,000 explanation of benefits letters to the wrong addresses last week, the Atlanta Journal-Constitution reports. The letters, which were mistakenly directed to the addresses of other policyholders, included names and insurance identification numbers of patients as well as the names of the doctors and other medical providers they were using.[..] A small proportion of the letters also had Social Security numbers, a spokeswoman for the company told the paper. Vulnerability to identity theft is one concern. But EOB letters are especially sensitive from a privacy standpoint because they contain some treatment information. And this is one of a steady stream of mistakes by the health-care industry when it comes to protecting electronic data. Blue Cross and Blue Shield of Georgia told the AJC that a computer system change was to blame, and it’s taken steps to avoid the problem in the future.’
I foresee many ‘computer system changes’ in the future. Is this what we have to look forward to? The steps they’re taking to ‘avoid the problem in the future’ currently may be completely different whatever steps are needed in the future. Will everyone be up to speed?
According to USA Today advocates for electronic prescribing ‘say it will have many benefits including decreasing medical errors, which harm least 1.5 million people every year, according to the Institute of Medicine. Doctors’ scrawl will be replaced with typed information, and potentially dangerous interactions with patients’ existing medications will be flagged.’ Yet privacy advocates are worried. ‘Transforming prescriptions from scrawl into a standardized electronic format can make them even easier for pharmacies to sell and trade, violating patient privacy, says Tim Sparapani, senior legislative counsel for the American Civil Liberties Union. ‘Any time you put something in a digital format and standardize it, it becomes much more profitable and easy to move those records.” The WSJ Health Blog also quotes the Coalition for Patient Privacy which said ‘While e-prescribing is attractive to many, Americans do not want their private prescription information data mined and used without their permission. Many Americans would be quite alarmed to discover their employer and others know they take an anti-anxiety medication or that they are being treated for an STD.’
I’m all for simplifying the paperwork process involved in healthcare. But I, like many others, am also worried about personal information being altered or available to those I don’t want accessing it. Will there be enough people enforcing our HIPAA rights? Will there be enough people to oversee these systems, to address immediate problems and to correct any glitches? Or will this be a windfall for Big Pharma and those who work in the field of law?
“This morning, I heard an astonishing interview on WNYC that discussed a Department of Health and Human Services (HHS) draft document that was just leaked. This document proposes to redefine nearly all forms of birth control, especially birth control pills, as a form of abortion and allows any federal grant recipient to obstruct a woman’s access to contraception [PDF]. Considering that roughly half of all American women use birth control pills, I think this is a shocking proposal that, if enacted, will change modern American society as we know it.
Currently, the federal government accepts the American Medical Association and the American College of Obstetricians and Gynecologists’ definition of pregnancy as beginning at implantation. However, the HHS proposes to reject that definition — provided by medical experts — and to change the federal definition of pregancy to conform with public polling data, as stated in the “Definitions” section of the proposal;
Abortion: An abortion is the termination of a pregnancy. There are two commonly held views on the question of when a pregnancy begins. Some consider a pregnancy to begin at conception (that is, the fertilization of the egg by the sperm), while others consider it to begin with implantation (when the embryo implants in the lining of the uterus). A 2001 Zogby International American Values poll revealed that 49% of Americans believe that human life begins at conception. Presumably many who hold this belief think that any action that destroys human life after conception is the termination of a pregnancy, and so would be included in their definition of the term “abortion.” Those who believe pregnancy begins at implantation believe the term “abortion” only includes the destruction of a human being after it has implanted in the lining of the uterus.
And then they propose;
[T]he Department proposes to define abortion as “any of the various procedures – including the prescription and administration of any drug or the performance of any procedure or any other action – that results in the termination of the life of a human being in utero between conception and natural birth, whether before or after implantation.”
It’s no secret that Big Pharma has been providing doctors with special perks in return for prescribing their products. This has been going on for ages. But to get a better grip on why the costs of healthcare have been increasing dramatically we need to understand about the massive networks that Big Pharma is involved in. Believe it or not, Big Pharma is connected to everything. The AMA, the FDA, the financial markets/big business, the insurance industry, law and politics; these are all affected by Big Pharma.
Recently it was reported that there are more Americans addicted to prescription drugs than illegal drugs. An article in The New York Times stated that ‘An analysis of autopsies in 2007 released this week by the Florida Medical Examiners Commission found that the rate of deaths caused by prescription drugs was three times the rate of deaths caused by all illicit drugs combined.’ That’s a pretty hefty number. I know quite a few people who became addicted to prescription drugs. Some said tranquilizers and painkillers were harder to quit than illegal drugs. Prescription pain killers have become the ‘new heroin’, and are increasingly becoming a major problem in the school system.
Not only are the doctors getting ‘perks’ from the drug companies, but the professors and the research facilities of major universities have been the recipient of ‘special benefits’ as well. Recently ‘three influential psychiatrists from Harvard Medical School seem to have been caught with their hands in the drug-laced cookie jar, and now they’re in big trouble. Two days after it was alleged that the three doctors failed to report a collective $4.2 million in payments from pharmaceutical companies, Harvard and the affiliated Massachusetts General Hospital have launched an investigation into the doctors’ behavior.’ Big Pharma = Big Money.
Let me just state for the record that I think research and development in pharmaceuticals is an important factor in saving lives. Not all prescription drugs are addictive or deadly. Many are necessary to keep people alive. But let me also state that many side effects from certain drugs are not discovered until many years later. This can be a ‘Catch-22’. Also more money is spent on advertising than on R&D. In an article by Science Daily it was reported that ‘the U.S. pharmaceutical industry spent 24.4% of the sales dollar on promotion, versus 13.4% for research and development, as a percentage of US domestic sales of US$235.4 billion.’ Instead of prolonging or enhancing life, getting the word out about their products is of priority.
Senator Charles Grassley (R-Iowa) is proposing legislation for reporting any payments over $500 paid by pharmaceutical companies to doctors or academic research to be on public record. ‘If they are being paid, it ought to be reported,’ said Sen. Charles Grassley, R-Iowa. Grassley is also looking at the money drug companies pay doctors for academic research. He is investigating some 20 top medical schools – including Harvard, Stanford and the University of Cincinnati, for under-reporting the income top researchers are getting from the drug industry. Grassley wants to learn if the money is influencing research.”
I think transparency on this is issue is way overdue. When the absurd ‘war on illegal drugs’ becomes part of a cover for the pharmaceutical companies’ desire to line their pockets, then something needs to be done.