The Science Sleuth Holding Fraudulent Research Accountable
Kira Peikoff was the editor-in-chief of Leaps.org from 2017 to 2021. As a journalist, her work has appeared in The New York Times, Newsweek, Nautilus, Popular Mechanics, The New York Academy of Sciences, and other outlets. She is also the author of four suspense novels that explore controversial issues arising from scientific innovation: Living Proof, No Time to Die, Die Again Tomorrow, and Mother Knows Best. Peikoff holds a B.A. in Journalism from New York University and an M.S. in Bioethics from Columbia University. She lives in New Jersey with her husband and two young sons. Follow her on Twitter @KiraPeikoff.
Introduction by Mary Inman, Whistleblower Attorney
For most people, when they see the word "whistleblower," the image that leaps to mind is a lone individual bravely stepping forward to shine a light on misconduct she has witnessed first-hand. Meryl Streep as Karen Silkwood exposing safety violations observed while working the line at the Kerr-McGee plutonium plant. Matt Damon as Mark Whitacre in The Informant!, capturing on his pocket recorder clandestine meetings between his employer and its competitors to fix the price of lysine. However, a new breed of whistleblower is emerging who isn't at the scene of the crime but instead figures it out after the fact through laborious review of publicly available information and expert analysis. Elisabeth Bik belongs to this new class of whistleblower.
"There's this delicate balance where on one hand we want to spread results really fast as scientists, but on the other hand, we know it's incomplete, it's rushed and it's not great."
Using her expertise as a microbiologist and her trained eye, Bik studies publicly available scientific papers to sniff out potential irregularities in the images that suggest research fraud, later seeking retraction of the offending paper from the journal's publisher. There's no smoking gun, no first-hand account of any kind. Just countless hours spent reviewing scores of scientific papers and Bik's skills and dedication as a science fraud sleuth.
While Bik's story may not as readily lend itself to the big screen, her work is nonetheless equally heroic. By tirelessly combing scientific papers to expose research fraud, Bik is playing a vital role in holding the scientific publishing process accountable and ensuring that misleading information does not spread unchecked. This is important work in any age, but particularly so in the time of COVID, where we can ill afford the setbacks and delays of scientists building on false science. In the present climate, where science is politicized and scientific principles are under attack, strong voices like Bik's must rise above the din to ensure the scientific information we receive, and our governments act upon, is accurate. Our health and wellbeing depend on it.
Whistleblower outsiders like Bik are challenging the traditional concept of what it means to be a whistleblower. Fortunately for us, the whistleblower community is a broad church. As with most ecosystems, we all benefit from a diversity of voices —whistleblower insiders and outsiders alike. What follows is an illuminating conversation between Bik, and Ivan Oransky, the co-founder of Retraction Watch, an influential blog that reports on retractions of scientific papers and related topics. (Conversation facilitated by LeapsMag Editor-in-Chief Kira Peikoff)
Elisabeth Bik and Ivan Oransky.
(Photo credits Michel & Co Photography, San Jose, CA and Elizabeth Solaka)
Ivan
I'd like to hear your thoughts, Elisabeth, on an L.A. Times story, which was picking up a preprint about mutations and the novel coronavirus, alleging that the virus is mutating to become more infectious – even though this conclusion wasn't actually warranted.
Elisabeth
A lot of the news around it is picking up on one particular side of the story that is maybe not that much exaggerated by the scientists. I don't think this paper really showed that the mutations were causing the virus to be more virulent. Some of these viruses continuously mutate and mutate and mutate, and that doesn't necessarily make a strain more virulent. I think in many cases, a lot of people want to read something in a paper that is not actually there.
Ivan
The tone level, everything that's being published now, it's problematic. It's being rushed, here it wasn't even peer-reviewed. But even when they are peer-reviewed, they're being peer-reviewed by people who often aren't really an expert in that particular area.
Elisabeth
That's right.
Ivan
To me, it's all problematic. At the same time, it's all really good that it's all getting out there. I think that five or 10 years ago, or if we weren't in a pandemic, maybe that paper wouldn't have appeared at all. It would have maybe been submitted to a top-ranked journal and not have been accepted, or maybe it would have been improved during peer review and bounced down the ladder a bit to a lower-level journal.
Yet, now, because it's about coronavirus, it's in a major newspaper and, in fact, it's getting critiqued immediately.
Maybe it's too Pollyanna-ish, but I actually think that quick uploading is a good thing. The fear people have about preprint servers is based on this idea that the peer-reviewed literature is perfect. Once it is in a peer-reviewed journal, they think it must have gone through this incredible process. You're laughing because-
Elisabeth
I am laughing.
Ivan
You know it's not true.
Elisabeth
Yes, we both know that. I agree and I think in this particular situation, a pandemic that is unlike something our generation has seen before, there is a great, great need for fast dissemination of science.
If you have new findings, it is great that there is a thing called a preprint server where scientists can quickly share their results, with, of course, the caveat that it's not peer-reviewed yet.
It's unlike the traditional way of publishing papers, which can take months or years. Preprint publishing is a very fast way of spreading your results in a good way so that is what the world needs right now.
On the other hand, of course, there's the caveat that these are brand new results and a good scientist usually thinks about their results to really interpret it well. You have to look at it from all sides and I think with the rushed publication of preprint papers, there is no such thing as carefully thinking about what results might mean.
So there's this delicate balance where on one hand we want to spread results really fast as scientists, but on the other hand, we know it's incomplete, it's rushed and it's not great. This might be hard for the general audience to understand.
Ivan
I still think the benefits of that dissemination are more positive than negative.
Elisabeth
Right. But there's also so many papers that come out now on preprint servers and most of them are not that great, but there are some really good studies in there. It's hard to find those nuggets of really great papers. There's just a lot of papers that come out now.
Ivan
Well, you've made more than a habit of finding problems in papers. These are mostly, of course, until now published papers that you examined, but what is this time like for you? How is it different?
Elisabeth
It's different because in the beginning I looked at several COVID-19-related papers that came out and wrote some critiques about it. I did experience a lot of backlash because of that. So I felt I had to take a break from social media and from writing about COVID-19.
I focused a little bit more on other work because I just felt that a lot of these papers on COVID-19 became so politically divisive that if you tried to be a scientist and think critically about a paper, you were actually assigned to a particular political party or to be against other political parties. It's hard for me to be sucked into the political discussion and to the way that our society now is so completely divided into two camps that seem to be not listening to each other.
Ivan
I was curious about that because I've followed your work for a number of years, as you know, and certainly you have had critics before. I'm thinking of the case in China that you uncovered, the leading figure in the Chinese Academy who was really a powerful political figure in addition to being a scientist.
Elisabeth
So that was a case in which I found a couple of papers at first from a particular group in China, and I was just posting on a website called PubPeer, where you can post comments, concerns about papers. And in this case, these were image duplication issues, which is my specialty.
I did not realize that the group I was looking at at that moment was led by one of the highest ranked scientists in China. If I had known that, I would probably not have posted that under my full name, but under a pseudonym. Since I had already posted, some people were starting to send me direct messages on Twitter like, "OMG, the guy you're posting about now is the top scientist in China so you're going to have a lot of backlash."
Then I decided I'll just continue doing this. I found a total of around 50 papers from this group and posted all of them on PubPeer. That story quickly became a very popular story in China: number two on Sina Weibo, a social media site in China.
I was surprised it wasn't suppressed by the Chinese government, it was actually allowed by journalists that were writing about it, and I didn't experience a lot of backlash because of that.
Actually the Chinese doctor wrote me an email saying that he appreciated my feedback and that he would look into these cases. He sent a very polite email so I sent him back that I appreciated that he would look into these cases and left it there.
Ivan
There are certain subjects that I know when we write about them in Retraction Watch, they have tended in the past to really draw a lot of ire. I'm thinking anything about vaccines and autism, anything about climate change, stem cell research.
For a while that last subject has sort of died down. But now it's become a highly politically charged atmosphere. Do you feel that this pandemic has raised the profile of people such as yourself who we refer to as scientific sleuths, people who look critically and analytically at new research?
Elisabeth
Yeah, some people. But I'm also worried that some people who are great scientists and have shown a lot of critical thinking are being attacked because of that. If you just look at what happened to Dr. Fauci, I think that's a prime example. Where somebody who actually is very knowledgeable and very cautious of new science has not been widely accepted as a great leader, in our country at least. It's sad to see that. I'm just worried how long he will be at his position, to be honest.
Ivan
We noticed a big uptick in our traffic in the last few days to Retraction Watch and it turns out it was because someone we wrote about a number of years ago has really hopped on the bandwagon to try and discredit and even try to have Dr. Fauci fired.
It's one of these reminders that the way people think about scientists has, in many cases, far more to do with their own history or their own perspective going in than with any reality or anything about the science. It's pretty disturbing, but it's not a new thing. This has been happening for a while.
You can go back and read sociologists of science from 50-60 years ago and see the same thing, but I just don't think that it's in the same way that it is now, maybe in part because of social media.
Elisabeth
I've been personally very critical about several studies, but this is the first time I've experienced being attacked by trolls and having some nasty websites written about me. It is very disturbing to read.
"I don't think that something that's been peer-reviewed is perfect and something that hasn't been peer reviewed, you should never bother reading it."
Ivan
It is. Yet you have been a fearless and vocal critic of some very high-profile papers, like the infamous French study about hydroxychloroquine.
Elisabeth
Right, the paper that came out was immediately tweeted by the President of the United States. At first I thought it was great that our President tweeted about science! I thought that was a major breakthrough. I took a look at this paper.
It had just come out that day, I believe. The first thing I noticed is that it was accepted within 24 hours of being submitted to the journal. It was actually published in a journal where one of the authors is the editor-in-chief, which is a huge conflict of interest, but it happens.
But in this particular case, there were also a lot of flaws with the study and that, I think, should have been caught during peer review. The paper was first published on a preprint server and then within 24 hours or so it was published in that paper, supposedly after peer review.
There were very few changes between the preprint version and the peer review paper. There were just a couple of extra lines, extra sentences added here and there, but it wasn't really, I think, critically looked at. Because there were a lot of things that I thought were flaws.
Just to go over a couple of them. This paper showed supposedly that people who were treated with hydroxychloroquine and azithromycin were doing much better by clearing their virus much faster than people who were not treated with these drugs.
But if you look carefully at the paper there were a couple of people who were left out of the study. So they were treated with hydroxychloroquine, but they were not shown in the end results of the paper. All six people who were treated with the drug combination were clearing the virus within six days, but there were a couple of others who were left out of the study. They also started the drug combination, but they stopped taking the drugs for several reasons and three of them were admitted to the intensive care, one died, one had some side effects and one apparently walked out of the hospital.
They were left out of the study but they were actually not doing very well with the drug combination. It's not very good science if you leave out people who don't do very well with your drug combination in your study. That was one of my biggest critiques of the paper.
Ivan
What struck us about that case was, in addition to what you, of course, mentioned, the fact that Trump tweeted it and was talking about hydroxychloroquine, was that it seemed to be a perfect example of, "well, it was in a peer review journal." Yeah, it was a preprint first, but, well, it's a peer review journal. And yet, as you point out, when you look at the history of the paper, it was accepted in 24 hours.
If you talk to most scientists, the actual act of a peer review, once you sit down to do it and can concentrate, a good one takes, again, these are averages, but four hours, a half a day is not unreasonable. So you had to find three people who could suddenly review this paper. As you pointed out, it was in a journal where one of the authors was editor.
Then some strange things also happened, right? The society that actually publishes the journal, they came out with a statement saying this wasn't up to our standards, which is odd. Then Elsevier came in, they're the ones who are actually contracted to publish the journal for the society. They said, basically, "Oh, we're going to look into this now too."
It just makes you wonder what happened before the paper was actually published. All the people who were supposed to have been involved in doing the peer review or checking on it are clearly very distraught about what actually happened. It's that scene from Casablanca, "I'm shocked, shocked there's gambling going on here." And then, "Your winnings, sir."
Elisabeth
Yes.
Ivan
And I don't actually blame the public, I don't blame reporters for getting a bit confused about what it all means and what they should trust. I don't think trust is a binary any more than anything else is a binary. I don't think that something that's been peer-reviewed is perfect and something that hasn't been peer reviewed, you should never bother reading it. I think everything is much more gray.
Yet we've turned things into a binary. Even if you go back before coronavirus, coffee is good for you, coffee is bad for you, red wine, chocolate, all the rest of it. A lot of that is because of this sort of binary construct of the world for journalists, frankly, for scientists that need to get their next grants. And certainly for the general public, they want answers.
On the one hand, if I had to choose what group of experts, or what field of human endeavor would I trust with finding the answer to a pandemic like this, or to any crisis, it would absolutely be scientists. Hands down. This is coming from someone who writes about scientific fraud.
But on the other hand, that means that if scientists aren't clear about what they don't know and about the nuances and about what the scientific method actually allows us to do and learn, that just sets them up for failure. It sets people like Dr. Fauci up for failure.
Elisabeth
Right.
Ivan
It sets up any public health official who has a discussion about models. There's a famous saying: "All models are wrong, but some are useful."
Just because the projections change, it's not proof of wrongness, it's not proof that the model is fatally flawed. In fact, I'd be really concerned if the projections didn't change based on new information. I would love it if this whole episode did lead to a better understanding of the scientific process and how scientific publishing fits into that — and doesn't fit into it.
Elisabeth
Yes, I'm with you. I'm very worried that the general audience's perspective is based on maybe watching too many movies where the scientist comes up with a conclusion one hour into the movie when everything is about to fail. Like that scene in Contagion where somebody injects, I think, eight monkeys, and one of the monkeys survives and boom we have the vaccine. That's not really how science works. Everything takes many, many years and many, many applications where usually your first ideas and your first hypothesis turn out to be completely wrong.
Then you go back to the drawing board, you develop another hypothesis and this is a very reiterative process that usually takes years. Most of the people who watch the movie might have a very wrong idea and wrong expectations about how science works. We're living in the movie Contagion and by September, we'll all be vaccinated and we can go on and live our lives. But that's not what is going to happen. It's going to take much, much longer and we're going to have to change the models every time and change our expectations. Just because we don't know all the numbers and all the facts yet.
Ivan
Generally it takes a fairly long time to change medical practice. A lot of times people see that as a bad thing. What I think that ignores, or at least doesn't take into as much account as I would, is that you don't want doctors and other health care professionals to turn on a dime and suddenly switch. Unless, of course, it turns out there was no evidence for what you were looking at.
It's a complicated situation.
Everybody wants scientists to be engineers, right?
Elisabeth
Right.
Ivan
I'm not saying engineering isn't scientific, nor am I saying that science is just completely whimsical, but there's a different process. It's a different way of looking at things and you can't just throw all the data into a big supercomputer, which is what I think a lot of people seem to want us to do, and then the obvious answer will come out on the other side.
Elisabeth
No. It's true and a lot of engineers suddenly feel their inherent need to solve this as a problem. They're not scientists and it's not building a bridge over a big river. But we're dealing with something that is very hard to solve because we don't understand the problem yet. I think scientists are usually first analyzing the problem and trying to understand what the problem actually is before you can even think about a solution.
Ivan
I think we're still at the understanding the problem phase.
Elisabeth
Exactly. And going back to the French group paper, that promised such a result and that was interpreted as such by a lot of people including presidents, but it's a very rare thing to find a medication that will have a 100% curation rate. That's something that I wish the people would understand better. We all want that to happen, but it's very unlikely and very unprecedented in the best of times.
Ivan
I would second that and also say that the world needs to better value the work that people like Elisabeth and others are doing. Because we're not going to get to a better answer if we're not rigorous about scrutinizing the literature and scrutinizing the methodology and scrutinizing the results.
"I quit my job to be able to do this work."
It's a relatively new phenomenon that you're able to do this at any scale at all, and even now it's at a very small scale. Elisabeth mentioned PubPeer and I'm a big fan — also full disclosure, I'm on their board of directors as a volunteer — it's a very powerful engine for readers and journal editors and other scientists to discuss issues.
And Elisabeth has used it really, really well. I think we need to start giving credit to people like that. And, also creating incentives for that kind of work in a way that science hasn't yet.
Elisabeth
Yeah. I quit my job to be able to do this work. It's really hard to combine it with a job either in academia or industry because we're looking for or criticizing papers and it's hard when you are still employed to do that.
I try to make it about the papers and do it in a polite way, but still it's a very hard job to do if you have a daytime job and a position and a career to worry about. Because if you're critical of other academics, that could actually mean the end of your career and that's sad. They should be more open to polite criticism.
Ivan
And for the general public, if you're reading a newspaper story or something online about a single study and it doesn't mention any other studies that have said the same thing or similar, or frankly, if it doesn't say anything about any studies that contradicted it, that's probably also telling you something.
Say you're looking at a huge painting of a shoreline, a beach, and a forest. Any single study is just a one-centimeter-by-one-centimeter square of any part of that canvas. If you just look at that, you would either think it was a painting of the sea, of a beach, or of the forest. It's actually all three of those things.
We just need to be patient, and that's very challenging to us as human beings, but we need to take the time to look at the whole picture.
DISCLAIMER: Neither Elisabeth Bik nor Ivan Oransky was compensated for participation in The Pandemic Issue. While the magazine's editors suggested broad topics for discussion, consistent with Bik's and Oransky's work, neither they nor the magazine's underwriters had any influence on their conversation.
[Editor's Note: This article was originally published on June 8th, 2020 as part of a standalone magazine called GOOD10: The Pandemic Issue. Produced as a partnership among LeapsMag, The Aspen Institute, and GOOD, the magazine is available for free online.]
Kira Peikoff was the editor-in-chief of Leaps.org from 2017 to 2021. As a journalist, her work has appeared in The New York Times, Newsweek, Nautilus, Popular Mechanics, The New York Academy of Sciences, and other outlets. She is also the author of four suspense novels that explore controversial issues arising from scientific innovation: Living Proof, No Time to Die, Die Again Tomorrow, and Mother Knows Best. Peikoff holds a B.A. in Journalism from New York University and an M.S. in Bioethics from Columbia University. She lives in New Jersey with her husband and two young sons. Follow her on Twitter @KiraPeikoff.
This Dog's Nose Is So Good at Smelling Cancer That Scientists Are Trying to Build One Just Like It
Daisy wouldn't leave Claire Guest alone. Instead of joining Guest's other dogs for a run in the park, the golden retriever with the soulful eyes kept nudging Guest's chest, and stared at her intently, somehow hoping she'd get the message.
"I was incredibly lucky to be told by Daisy."
When Guest got home, she detected a tiny lump in one of her breasts. She dismissed it, but her sister, who is a family doctor, insisted she get it checked out.
That saved her life. A series of tests, including a biopsy and a mammogram, revealed the cyst was benign. But doctors discovered a tumor hidden deep inside her chest wall, an insidious malignancy that normally isn't detected until the cancer has rampaged out of control throughout the body. "My prognosis would have been very poor," says Guest, who is an animal behavioralist. "I was incredibly lucky to be told by Daisy."
Ironically, at the time, Guest was training hearing dogs for the deaf—alerting them to doorbells or phones--for a charitable foundation. But she had been working on a side project to harness dogs' exquisitely sensitive sense of smell to spot cancer at its earliest and most treatable stages. When Guest was diagnosed with cancer two decades ago, however, the use of dogs to detect diseases was in its infancy and scientific evidence was largely anecdotal.
In the years since, Guest and the British charitable foundation she co-founded with Dr. John Church in 2008, Medical Detection Dogs (MDD), has shown that dogs can be trained to detect odors that predict a looming medical crisis hours in advance, in the case of diabetes or epilepsy, as well as the presence of cancers.
In a proof of principle study published in the BMJ in 2004, they showed dogs had better than a 40 percent success rate in identifying bladder cancer, which was significantly better than random chance (14 percent). Subsequent research indicated dogs can detect odors down to parts per trillion, which is the equivalent of sniffing out a teaspoon of sugar in two Olympic size swimming pools (a million gallons).
American scientists are devising artificial noses that mimic dogs' sense of smell, so these potentially life-saving diagnostic tools are widely available.
But the problem is "dogs can't be scaled up"—it costs upwards of $25,000 to train them—"and you can't keep a trained dog in every oncology practice," says Guest.
The good news is that the pivotal 2004 BMJ paper caught the attention of two American scientists—Andreas Mershin, a physicist at MIT, and Wen-Yee Yee, a chemistry professor at The University of Texas at El Paso. They have joined Guest's quest to leverage canines' highly attuned olfactory systems and devise artificial noses that mimic dogs' sense of smell, so these potentially life-saving diagnostic tools are widely available.
"What we do know is that this is real," says Guest. "Anything that can improve diagnosis of cancer is something we ought to know about."
Dogs have routinely been used for centuries as trackers for hunting and more recently, for ferreting out bombs and bodies. Dogs like Daisy, who went on to become a star performer in Guest's pack of highly trained cancer detecting canines before her death in 2018, have shared a special bond with their human companions for thousands of years. But their vastly superior olfaction is the result of simple anatomy.
Humans possess about six million olfactory receptors—the antenna-like structures inside cell membranes in our nose that latch on to the molecules in the air when we inhale. In contrast, dogs have about 300 million of them and the brain region that analyzes smells is, proportionally, about 40 times greater than ours.
Research indicates that cancerous cells interfere with normal metabolic processes, prompting them to produce volatile organic compounds (VOCs), which enter the blood stream and are either exhaled in our breath or excreted in urine. Dogs can identify these VOCs in urine samples at the tiniest concentrations, 0.001 parts per million, and can be trained to identify the specific "odor fingerprint" of different cancers, although teaching them how to distinguish these signals from background odors is far more complicated than training them to detect drugs or explosives.
For the past fifteen years, Andreas Mershin of MIT has been grappling with this complexity in his quest to devise an artificial nose, which he calls the Nano-Nose, first as a military tool to spot land mines and IEDS, and more recently as a cancer detection tool that can be used in doctors' offices. The ultimate goal is to create an easy-to-use olfaction system powered by artificial intelligence that can fit inside of smartphones and can replicate dogs' ability to sniff out early signs of prostate cancer, which could eliminate a lot of painful and costly biopsies.
Andreas Mershin works on his artificial nose.
Trained canines have a better than 90 percent accuracy in spotting prostate cancer, which is normally difficult to detect. The current diagnostic, the prostate specific antigen test, which measures levels of certain immune system cells associated with prostate cancer, has about as much accuracy "as a coin toss," according to the scientist who discovered PSA. These false positives can lead to unnecessary and horrifically invasive biopsies to retrieve tissue samples.
So far, Mershin's prototype device has the same sensitivity as the dogs—and can detect odors at parts per trillion—but it still can't distinguish that cancer smell in individual human patients the way a dog can. "What we're trying to understand from the dogs is how they look at the data they are collecting so we can copy it," says Mershin. "We still have to make it intelligent enough to know what it is looking at—what we are lacking is artificial dog intelligence."
The intricate parts of the artificial nose are designed to fit inside a smartphone.
At UT El Paso, Wen-Yee Lee and her research team has used the canine olfactory system as a model for a new screening test for prostate cancer, which has a 92 percent accuracy in tests of urine samples and could be eventually developed as a kit similar to the home pregnancy test. "If dogs can do it, we can do it better," says Lee, whose husband was diagnosed with prostate cancer in 2005.
The UT scientists used samples from about 150 patients, and looked at about 9,000 compounds before they were able to zero in on the key VOCs that are released by prostate cancers—"it was like finding a needle in the haystack," says Lee. But a more reliable test that can also distinguish which cancers are more aggressive could help patients decide their best treatment options and avoid invasive procedures that can render them incontinent and impotent.
"This is much more accurate than the PSA—we were able to see a very distinct difference between people with prostate cancer and those without cancer," says Lee, who has been sharing her research with Guest and hopes to have the test on the market within the next few years.
In the meantime, Guest's foundation has drawn the approving attention of royal animal lovers: Camilla, the Duchess of Cornwall, is a patron, which opened up the charitable floodgates and helped legitimize MDD in the scientific community. Even Camilla's mother-in-law, Queen Elizabeth, has had a demonstration of these canny canines' unique abilities.
Claire Guest, and two of MDDs medical detection dogs, Jodie and Nimbus, meet with queen Elizabeth.
"She actually held one of my [artificial] noses in her hand and asked really good questions, including things we hadn't thought of, like the range of how far away a dog can pick up the scent or if this can be used to screen for malaria," says Mershin. "I was floored by this curious 93-year-old lady. Half of humanity's deaths are from chronic diseases and what the dogs are showing is a whole new way of understanding holistic diseases of the system."
Move Over, Iron Man. A Real-Life Power Suit Helped This Paralyzed Grandmother Learn to Run.
Puschel Sorensen first noticed something was wrong when her fingertips began to tingle. Later that day, she grew weak and fell.
It picked up small electrical impulses on her skin's surface and turned them into full movement in her legs.
Her family rushed her to the doctor, where she received the devastating diagnosis of Guillain-Barré Syndrome -- a rare and rapidly progressing autoimmune disorder that attacks the myelin sheath covering nerves.
Sorensen, a once-spry grandmother in her late fifties, spent 54 days in intensive care in 2018. When she was finally transferred to a rehab facility near her home in Florida, she was still on a feeding tube and ventilator, and was paralyzed from the neck down. Progress with traditional physical therapy was slow.
Sorensen in the hospital after her diagnosis of Guillain-Barré syndrome.
And then everything changed. Sorensen began using a cutting-edge technology called an exoskeleton to relearn how to walk. In the vein of Iron Man's fictional power suit, it confers strength and mobility to the wearer that isn't possible otherwise. In Sorensen's case, her device, called HAL – for hybrid assistive limb -- picked up small electrical impulses on her skin's surface and turned them into full movement in her legs while she attempted to walk on a treadmill.
"It was very difficult, but super awesome," recalls Sorensen, of first using the device. "The robot was having to do all the work for me."
Amazingly, within a year, she was running. She's one of 38 patients who have used HAL to recover from accidents or medical catastrophes.
Cyberdyne's hybrid assistive limb technology.
"How do you thank someone for giving them back the ability to walk, the ability to live your life again?" Sorensen asks effusively.
It's still early days for such exoskeleton devices, which number perhaps a few thousand worldwide, according to data from the handful of manufacturers who create them with any scale. But the devices' ability to dramatically rehabilitate patients like Sorensen highlights their potential to extract untold numbers of people from wheelchairs, and even to usher in a new paradigm for caregiving – one of the fastest growing segments of the U.S. economy.
"I've been a physical therapist for 16 years, and (these devices) help teach patients the right way to move in rehabilitation," says Robert McIver, director of clinical technology at the Brooks Cybernic Treatment Center, part of the Brooks Rehabilitation Hospital in Jacksonville, Fla, where Sorensen recovered.
Another patient there, a 17-year-old named George with a snowboarding injury that paralyzed his legs, was getting around with a walker within 20 sessions.
As patients progress in their recoveries, so does exoskeleton technology. Jack Peurach, CEO of Ekso, one of the leaders in the space, believes within a decade they could resemble an article of clothing (a "magic pair of pants" is his phrase). They also may become inexpensive and reliable enough to transition from a medical to a consumer device. McIver sees them eventually being used in the home on an ongoing basis as a personal assistive device, much like a walker or cane, to prevent falls in elderly people.
Such a transition "certainly could eventually lessen the need for caregivers," says Sharona Hoffman, a professor of law at Case Western University in Cleveland who has written extensively on aging and bioethics. "We have a real shortage of caregivers, so that would be a good thing."
Of course, having an aging and disabled population using exoskeletons in much the same way as an Apple Watch raises issues of its own.
Dr. Elizabeth Landsverk, a California-based geriatrician and founder of a company that performs house calls for elderly patients, believes the tech holds some promise in easing the burden on caregivers, who sometimes have to lift or move patients without assistance. But she also believes exoskeletons could become overhyped.
"I don't see robotics as completely replacing the caregiver," she says. And even if exoskeletons became akin to articles of clothing, she is skeptical of how convenient they could become.
"It's hard enough to get into support hose. Would an older person be able to get in and out of it on their own?" she asks, noting that a patient's cognitive levels could pose a huge barrier to donning such a device without assistance.
If personal exoskeletons did wildly succeed, Hoffman wonders whether they would leave the elderly more physically mobile yet also more socially isolated, since caregivers or even residing in an assisted living facility may no longer be required. Or, if they were priced in the hundreds or thousands of dollars, he worries that the cost would exacerbate social inequalities among the elderly and disabled.
"It's almost like a bad dream that [my illness] happened."
With any technology that confers superhuman ability, there's also the question of appropriate usage. Even the fictional Power Loader in the movie Alien required an operator's license. In the real world, such an approach would likely pay dividends.
"We would have to make sure physicians are well-trained in these devices, and patients have a way of getting training to operate them that is thorough and responsible," Hoffman says.
But despite some unresolved questions, it is a remarkable achievement to be able to give people back their lives thanks to new technology.
"It's almost like a bad dream that [my illness] happened," says Sorensen, who managed to walk in her daughter's wedding after her recovery. "Because now everything is pretty much back to normal and it's awesome."