Sunrise in Austin, Texas
Credit: lkw51 – May 2011
Tatiana and Krista Hogan are craniopagus twins (Tatiana is on the left). They are connected at the head and share a brain. They were born Oct. 25, 2006, to parents Felicia and Brendan Hogan of British Columbia, Canada. “These twins, I think to our current knowledge, are the only ones that do have a common neurological connection,” said Dr. Doug Cochrane, the twins’ pediatric neurologist. (Courtesy Renegade Pictures)
The Two Conjoined Twins, Krista and Tatiana
Stephanie Sinclair/VII, for The New York Times
Two, United as One: Krista and Tatiana Hogan are craniopagus conjoined twins — joined at the head, they share a neural bridge.
By SUSAN DOMINUS
The New York Times, Published: May 25, 2011
Tatiana and Krista Hogan are healthy, happy 4-year-olds who share everything — maybe even their thoughts. Their brain images reveal what looks like an attenuated line stretching between the two organs called a thalamic bridge, which may link the thalamus of one girl to the thalamus of her sister.
The thalamus is a kind of switchboard, a two-lobed organ that filters most sensory input and has long been thought to be essential in the neural loops that create consciousness. Because the thalamus functions as a relay station, the girls’ doctors believe it is entirely possible that the sensory input that one girl receives could somehow cross that bridge into the brain of the other. So if one girl drinks, the other feels it.
Tatiana and Krista live with their parents and extended family in Vernon, a small city in British Columbia. Felicia Simms says her daughters are “two normal little girls.” Although they rarely venture outside their home, they spend most days the way many preschoolers do, chasing after an uncle’s puppy or watching “Dora the Explorer.”
Krista receives a heart test during a two-week trip to Vancouver. Twins joined at the head — the medical term is craniopagus — are one in 2.5 million, of which only a fraction survive. Separation is extremely high risk.
The twins are constantly negotiating and collaborating with each other.
Tatiana and Krista will start kindergarten in the fall, their first major foray into the outside world.
It was bedtime for Krista and Tatiana Hogan, and the 4-year-old twin girls were doing what 4-year-olds everywhere do at bedtime. They were stalling, angling for more time awake. Their grandmother, Louise McKay, who lives with the girls and their parents in Vernon, a small city in British Columbia, was speaking to them in soothing tones, but the girls resorted to sleep-deferring classics of the toddler repertory. “I want one more hug!” Krista said to their grandmother, and then a few minutes later, they both called out to her, in unison, “I miss you!”
But in the dim light of their room, a night light casting faint, glowing stars and a moon on the ceiling, the girls also showed bedtime behavior that seemed distinctly theirs. The twins, who sleep in one specially built, oversize crib, lay on their stomachs, their bottoms in the air, looking at an open picture book on the mattress. Slowly and silently, in one synchronized movement, they pushed it under a blanket, then pulled it out again, then back under, over and over, seeming to mesmerize each other with the rhythm.
Suddenly the girls sat up again, with renewed energy, and Krista reached for a cup with a straw in the corner of the crib. “I am drinking really, really, really, really fast,” she announced and started to power-slurp her juice, her face screwed up with the effort. Tatiana was, as always, sitting beside her but not looking at her, and suddenly her eyes went wide. She put her hand right below her sternum, and then she uttered one small word that suggested a world of possibility: “Whoa!”
In any other set of twins, the natural conclusion about the two events — Krista’s drinking, Tatiana’s reaction — would be that they were coincidental: a gulp, a twinge, random simultaneous happenstance. But Krista and Tatiana are not like most other sets of twins. They are connected at their heads, where their skulls merge under a mass of shaggy brown bangs. The girls run and play and go down their backyard slide, but whatever they do, they do together, their heads forever inclined toward each other’s, their neck muscles strong and sinuous from a never-ending workout.
Twins joined at the head — the medical term is craniopagus — are one in 2.5 million, of which only a fraction survive. The way the girls’ brains formed beneath the surface of their fused skulls, however, makes them beyond rare: their neural anatomy is unique, at least in the annals of recorded scientific literature. Their brain images reveal what looks like an attenuated line stretching between the two organs, a piece of anatomy their neurosurgeon, Douglas Cochrane of British Columbia Children’s Hospital, has called a thalamic bridge, because he believes it links the thalamus of one girl to the thalamus of her sister. The thalamus is a kind of switchboard, a two-lobed organ that filters most sensory input and has long been thought to be essential in the neural loops that create consciousness. Because the thalamus functions as a relay station, the girls’ doctors believe it is entirely possible that the sensory input that one girl receives could somehow cross that bridge into the brain of the other. One girl drinks, another girl feels it.
What actually happens in moments like the one I witnessed is, at this point, theoretical guesswork of the most fascinating order. No controlled studies have been done; because the girls are so young and because of the challenges involved in studying two conjoined heads, all the advanced imaging technology available has not yet been applied to their brains. Brain imaging is inscrutable enough that numerous neuroscientists, after seeing only one image of hundreds, were reluctant to confirm the specific neuroanatomy that Cochrane described; but many were inclined to believe, based on that one image, that the brains were most likely connected by a live wire that could allow for some connection of a nature previously unknown. A mere glimpse of that attenuated line between the two brains reduced accomplished neurologists to sputtering incredulities. “OMG!!” Todd Feinberg, a professor of clinical psychiatry and neurology at Albert Einstein College of Medicine, wrote in an e-mail. “Absolutely fantastic. Unbelievable. Unprecedented as far as I know.” A neuroscientist in Kelowna, a city in British Columbia near Vernon, described their case as “ridiculously compelling.” Juliette Hukin, their pediatric neurologist at BC Children’s Hospital, who sees them about once a year, described their brain structure as “mind-blowing.”
An incomparable resource for neuroscientists interested in tracing neural pathways, in the malleability of the brain and in the construction of the self, Tatiana and Krista are also a study in the more expansive neural system of sociology: the feedback loop of how their family responds to difference, how the world outside the walls of their home responds to the family’s response and how the girls respond in turn. For now, for the most part, the girls are not treated as if they were, as one neuroscientist described them, “a new life form.” Although they rarely venture outside their home, they spend most days the way many preschoolers do, chasing after an uncle’s puppy or watching “Dora the Explorer” or testing their grandmother’s considerable patience as they play their private games at bedtime.
“Now I do it,” Tatiana said, reaching for the cup from which her sister was just drinking. She started to chug. Krista’s hand flew to her own stomach. “Whoa!” she said. The girls cracked up. Louise sighed. “Girls,” she said one more time. “It is time to settle down.”
When Felicia Simms found out about the unusual nature of her pregnancy, she was 20 years old with two small children, living on her own in a small apartment and relying on the Canadian welfare system for financial support. She still had an on-again, off-again relationship with the father of her first child, her high-school sweetheart, Brendan Hogan, but they often fought about his drinking and drug use, and he worked only sporadically, in construction or at a meatpacking plant. There are probably no two parents who would feel prepared to cope with such life-altering news, but Simms and Hogan did not have the benefit of significant resources to help them.
The evening after her first prenatal checkup, Simms, who had just learned she was having twins, got a call from her doctor, asking her to come back the next day. Concerned, she brought along her mother, Louise, and a sister-in-law. There was no easy way to say this, the doctor said: the twins were conjoined. The room went silent. Then all three women wept. Simms has little recollection about what was going through her mind at that moment. She was not without a reference point: both Simms and her mother had been fascinated by documentaries about Lori and Reba Schappell, two sharp, functional women who are, at age 49, the oldest living female craniopagus twins in the United States. “I was just trying to process it,” Simms said.
The obstetrician informed her that one of her options was to terminate the pregnancy.“I didn’t even consider it,” Simms said, sitting at the dining-room table of her home in Vernon, a popular ski-resort town set in a region of British Columbia known for its emerald green lake and stunning mountain views. “I think I have a lot more respect for nature than a lot of other people.”
Now 25, Simms is a mother of five children: Rosa, 8; Christopher, 6; Tatiana and Krista; and Shaylee, who is 3, born a year and a half after the twins. They live together with their maternal grandparents, three cousins, an aunt and uncle and Hogan, who moved in with the family last year. When I met them, they resided in a tract house that had been subdivided into many rooms for senior living before the Hogan-McKay clan arrived. The family relies mostly on public assistance. Dinner sometimes seems to make it on the table only by some last-minute stroke of luck or resourcefulness.
Simms has always appreciated what she characterizes as her mother’s easygoing ways. It was Louise who paid for her first facial piercing, at age 12, and who accepted the news easily when she learned her daughter was pregnant three years later. “We were never normal,” Simms says, and “that was O.K.” She thinks that in some ways it was easier for her family to accept the idea of conjoined twins than it might have been for a family that was more conventional. They did not have to reinvent their sense of themselves, the image they presented to the world. “In my house growing up, everything didn’t have to be perfect,” she said. “I never had to be like everybody else, look like everybody else.”
Unless the twins are having a rare health crisis or are being followed by video cameras (the National Geographic Channel showed a documentary about them last year), they are part of the general background din of the house and a far less dominant issue than the pressing financial concerns. The adults of the family tend to congregate around the long dining-room table, where the girls’ grandmother runs both a delivery business and the household — directing drivers, calling out to the twins to stop teasing their little sister and planning dinner for everyone.
Simms has the same coloring and smoky eye makeup of the actress Kristen Stewart, and the movie “Twilight” plays in heavy rotation at their home. A fascination with the supernatural seemed to inform even how she thought about her unusual pregnancy. “A month before they were born, I had a dream of them being born that was completely the way it happened,” Simms said, sitting at the dining-room table. “I heard them crying in my dream just like they cried when they were born. I just knew they were going to be fine.”
By the time she delivered, the doctors were preparing her for the worst; social workers met with her about grief counseling. But Simms’s intuition was right: the twins were born healthy at 34 weeks, miraculously stable and in need of no major interventions. The girls stayed under observation at the hospital for two months, and soon Simms and Hogan faced another major decision — whether or not to separate them.
Cochrane, their neurosurgeon, consulted with other surgeons who have separated conjoined craniopagus twins, and the team concluded, based on their experience with that kind of surgery and their analysis of the CT scans, that separation would be extremely high risk.
“You’d have to have cut through too much normal tissue and split the thalami,” said James T. Goodrich, director of pediatric neurosurgery for Children’s Hospital at Montefiore in the Bronx who was consulted on the case. “It would have potentially been lethal.”
Goodrich knows from experience how unpredictable and potentially dangerous any separation of craniopagus twins is likely to be. Beginning in 2003, he performed a series of operations to separate Clarence and Carl Aguirre, craniopagus conjoined twins who were 18 months old during the first operation. Although Goodrich proclaimed their futures bright at the time of the separation, and one of the two boys is indeed thriving, his brother eventually developed debilitating seizures; the boy, now 9, takes medication that impairs his alertness and cognition.
In the case of the Aguirre brothers, neither boy would likely have survived without the surgery, because the layout of their vascular systems put too much pressure on Clarence’s heart. In the case of Tatiana and Krista, however, Goodrich said, “Mother Nature, or whoever their God is, did not give them the other issues that are the problem with these kids — cardiac failure.” Although Tatiana does bear more of the burden of pumping blood for their two bodies, the vascular system is symmetrical enough that the doctors consider them relatively healthy. (Given the risks, the family opted not to separate the girls.)
From the very beginning, doctors wondered if the twins shared sensation; an early video shows one girl being pricked for a blood test as the other starts to cry, her face a perfect mirror image of her sister’s. A pacifier in one mouth seemed to soothe both crying babies.
Despite the interest of the scientific community, the girls, because of their age, have not experienced extensive investigation. “If one of them needs it for their health, by all means, they can do what they need to do,” said their step-grandfather, Doug McKay, who, like their grandmother, is very involved in the girls’ care. “But I’ll be damned if you’re going to poke and prod and experiment on them.”
Cochrane gives the family credit for being “able to play the hand they’ve been dealt . . . and to recognize that these kids are growing and developing. And that they’re not that different from normal kids.”
‘I have two pieces of paper,” Krista announced. The girls sat at a small table in the living room, drawing, their faces, as always, angled away from each other. Each had one piece of paper. So I was surprised by Krista’s certainty: She had two pieces of paper? “Yeah,” the girls affirmed in their frequent singsong unison, nodding together. It was one of those moments that a neurologist or psychologist or any curious observer could spend hours contemplating. Was Krista using “I” to refer to both her and her sister? Is Tatiana agreeing with her sister’s assessment at a cognitive level or uttering the same word simultaneously for reasons unknown to her?
Although the girls can run, play peekaboo, engage in finger play shoot’em-ups for 20-minute marathons and covet their older sister’s Zhu Zhu pets, they are both also developmentally delayed by about one year. Their delays do not surprise their doctors, given their unusual brains and the fact that the girls have been forced to develop skills other children have not.
A crayon drops to the floor, and I move to pick it up, imagining how laborious it would be for them to move away from the table as one, with Tatiana leaning awkwardly to allow her sister to crouch to the ground. When I reach for it, however, the crayon is not there. It is already in Krista’s hand, as if by magic. “My foot do it!” she tells me. Neither girl could draw the letter X, but if there were a standardized test for grasping with toes, the Hogan twins would surely come up in the 99th percentile.
The girls’ brains are so unusually formed that doctors could not predict what their development would be like: each girl has an unusually short corpus callosum, the neural band that allows the brain’s two cerebral hemispheres to communicate, and in each girl, the two cerebral hemispheres also differ in size, with Tatiana’s left sphere and Krista’s right significantly smaller than is typical. “The asymmetry raises intriguing questions about whether one can compensate for the other because of the brain bridge,” said Partha Mitra, a neuroscientist at Cold Spring Harbor Laboratory, who studies brain architecture. The girls’ cognition may also be facing specific challenges that no others have experienced: some kind of confusing crosstalk that would require additional energy to filter and process. In addition to sorting out the usual sensory experiences of the world, the girls’ brains, their doctors believe, have been forced to adapt to sensations originating with the organs and body parts of someone else.
As fantastic as it sounds, there is little doubt in Cochrane’s mind that the girls share some sensory impressions. When they were 2 years old, he performed a study in which Krista’s eyes were covered and electrodes were glued to her scalp. While a strobe light flashed in Tatiana’s eyes, Krista was emitting a strong electric response from the occipital lobe, which is where images are assembled. The test also worked when the girls switched roles. The results were not published, and some neuroscientists believe that this kind of test, which measures changes in brain activity beneath the skull, is imprecise in determining what region of the brain is at play; but most would agree that any response in the other twin’s brain suggests, at a minimum, connectivity.
The explanation Cochrane proposes is surprisingly straightforward for so unusual an outcome: that visual input comes in through the retinas of one girl, reaches her thalamus, then takes two different courses, like electricity traveling along a wire that splits in two. In the girl who is looking at the strobe or a stuffed animal in her crib, the visual input continues on its usual pathways, one of which ends up in the visual cortex. In the case of the other girl, the visual stimulus would reach her thalamus via the thalamic bridge, and then travel up her own visual neural circuitry, ending up in the sophisticated processing centers of her own visual cortex. Now she has seen it, probably milliseconds after her sister has.
The results of the test did not surprise the family, who had long suspected that even when one girl’s vision was angled away from the television, she was laughing at the images flashing in front of her sister’s eyes. The sensory exchange, they believe, extends to the girls’ taste buds: Krista likes ketchup, and Tatiana does not, something the family discovered when Tatiana tried to scrape the condiment off her own tongue, even when she was not eating it.
Even knowing about the tests and what Cochrane believed, I listened to the family’s stories with some amount of skepticism. Perhaps they were imagining it or exaggerating for the sake of a good story. Then in one of the many idle moments of the five days I spent with the family, the girls were watching television, and I absent-mindedly gave Tatiana’s foot, which Krista could not see, a little tickle. She turned to me and smiled, and then Krista spoke: “Now do me,” she said. Had she felt the sensation but wanted the emotional experience of knowing that she, too, was receiving that kind of playful attention?
On another day, Simms picked up a thermometer that had been left on the kitchen table and, just for fun, placed it in Krista’s mouth. Almost immediately, Tatiana got a distant look in her eyes. “Not in mouth,” she said, sounding angry. Then she was quiet, and her focus seemed to tack hard. Her tongue, visible in her half-open mouth, was moving in an unusual way, curling. I wondered if I was imagining something. But Rosa, her 8-year-old sister, noticed it, too.
“Isn’t that weird?” she said, her own blue-green eyes wide. “Did you see? The way her tongue was curled? It was in Krista’s mouth, but Tatty’s tongue was doing that.”
Rosa paused for a moment, thinking about the imaginary thermometer, then changed the subject to tell me about the part she had in a school show, playing “the nerd sheep.” Just once, could a visitor’s attention be directed at her own extraordinary role in the world?
At first, the sight of their younger sister, Shaylee, walking freely past the girls, struck me as painful, a constant reminder of their own constraints, her liberty a moment-by-moment assertion of superiority. But over time, my sympathies switched: the twins’ unity was so strong I wondered if Shaylee felt she was somehow missing an essential part of herself. When the girls wanted to wash their hands in the sink, they worked as one, silently, to drag the bench over to the bathroom. More often than not, they both seemed to want to slither like snakes at the same moment, to roll a ball down a ramp to the television room, to drift toward the electric piano. But acceptance, rather than mutual desire, might be at play: the family often reminds them they have no choice but to compromise, and Simms believes they have a private logic for determining whose turn it is to decide their whereabouts.
In the Hogan-McKay family, the fantasy of twinship, of a loving double, runs strong. Simms insists that her daughter Shaylee is her perfect replica, identical in face and temperament — she calls her “my mini-me.” The girls’ older sister, the tiny, round-faced Rosa, told me that she and her cousin Shyann, who lives with her, “are like twins” — despite the fact that Shyann is much taller and a year older. And Christopher, a winsome 6-year-old with a Mohawk that matches his father’s, has been told that he had a twin who died in the womb. The remnants of the twin, the doctors told his mother, were absorbed into his body, leaving only an unusual hairy patch on his back that still remains, the soft fuzzy shadow of a life that might have been. “If I don’t feel like being me, I can switch to how my twin feels,” Christopher told me once, as he was playing a video game. “And if I’m mad, I can switch to how my twin feels. Then I can switch back to being me.”
Tatiana and Krista represent even more of a unity than the closest identical twins, and in a house where everyone’s attention is divided, the girls always have each other. Simms is the first to acknowledge that her relationship with the twins is different from those she has with her other children. “Rosa was my firstborn, so that’s always special,” she said, “and Christopher’s the only boy. And Shaylee, she’s my baby.” The twins, she says, are really “Nana’s girls,” partly because they bonded with their grandmother when Simms was going through her difficult pregnancy with Shaylee. If some other, more painful distinction is at play — a rejection of their difference or a sense of burden — that response is not apparent.
Though they frequently move in near synchrony, mirroring each other’s gestures, the girls clearly have different personalities. Simms says Tatiana is more lighthearted, that Krista is “more of the bully” — that she is moved to scratch or hit Tatiana in frustration more often than the reverse. And they look remarkably different, although they are thought to be identical. Tatiana’s heart and kidneys do more of the work for their bodies than Krista’s do, so she is smaller than her sister, frailer, diminutive like her fairy namesake; Krista has the round belly and cheeks of many a preschooler. Krista has a small dot of a red birthmark on her chest; Tatiana does not. Krista is allergic to canned corn; Tatiana is not. Even twinship, shared daily experiences and possibly shared sensory experiences do not render them one and the same.
When the girls were younger, they used to try to pull their heads away from each other, Simms told me. “And I would say to them, ‘You can’t do that,’ ” she said. “I just told them: ‘You girls are stuck. You’re stuck together.’ ” Sometimes the girls would offer up that information themselves. “I am stuck,” Krista told me one afternoon, pausing as she and her sister made their way back to the bathroom, where they wanted to play with the faucets. She tapped the portion of the head that she shares with her sister. And does she like being stuck? “I love I am stuck,” she said. She smiled. She had the dreamy look of someone romantically infatuated. “I love my lovely sissy,” she said. Later that day, Tatiana announced the same thing, but she sounded more distressed, confused: “I am stuck,” she said, a querulous look on her face. She was a girl sending a message in a bottle, or from a bottle, searching for some answer to the essential question of her mysterious, still-forming mind.
Later in the week, Simms was getting Tatiana and Krista dressed for a five-hour van ride on treacherous roads in the snow to Vancouver, where the girls had a series of doctors’ appointments. This time there was no fighting over the two different sweatshirts. On the rare occasions when the girls do fight, it’s painful to watch: they reach their fingers into each other’s mouths and eyes, scratching, slapping, hands simultaneously flying to their own cheeks to soothe the pain.
That morning, even though Krista grabbed initially at the pink hooded sweatshirt, she ceded it easily to Tatiana, and Krista settled for the gray. “I am in gray,” she said. “And I am in pink,” Tatiana said. Something about the clear distinction may have rung some bell in Krista’s mind. She looked at her mother. “I am just me,” she said. The sentiment — assertive and profound — was hardly out of her mouth before her sister echoed her. “I am just me,” Tatiana said.
The girls surely have a complicated conception of what they mean by “me.” If one girl sees an object with her eyes and the other sees it via that thalamic link, are they having a shared experience? If the two girls are unique individuals, then each girl’s experience of that stimulus would inevitably be different; they would be having a parallel experience, but not one they experienced in some kind of commingling of consciousness. But do they think of themselves as one when they speak in unison, as they often do, if only in short phrases? When their voices joined together, I sometimes felt a shift — to me, they became one complicated being who happened to have two sets of vocal cords, no less plausible a concept than each of us having two eyes. Then, just as quickly, the girls’ distinct minds would make their respective presences felt: Tatiana smiled at me while her sister fixated on the television, or Krista alone responded with a “Yeah?” to the call of her name.
Although each girl often used “I” when she spoke, I never heard either say “we,” for all their collaboration. It was as if even they seemed confused by how to think of themselves, with the right language perhaps eluding them at this stage of development, under these unusual circumstances — or maybe not existing at all. “It’s like they are one and two people at the same time,” said Feinberg, the professor of psychiatry and neurology at Albert Einstein College of Medicine. What pronoun captures that?
The average person tends to fall back on the Enlightenment notion of the self — one mind, with privacy of thought and sensory experience — as a key characteristic of identity. That very impermeability is part of what makes the concept of the mind so challenging to researchers studying how it works, the neuroscientist and philosopher Antonio Damasio says in his book, “Self Comes to Mind.” “The fact that no one sees the minds of others, conscious or not, is especially mysterious,” he writes. We may be capable of guessing what others think, “but we cannot observe their minds, and only we ourselves can observe ours, from the inside, and through a rather narrow window.”
And yet here are two girls who can possibly — humbly, daily — feel what the other feels. Even that extraordinary dynamic would still put the girls on the continuum of connectivity that exists between ordinary humans. Some researchers believe that when we observe another person feeling, say, the prick of a pin, our neurons fire in a way that directly mimics the neurons firing in the person whom the pin actually pricks. So-called mirror neurons are thought to foster empathy, creating connections of which we are hardly aware but that bind us in some kind of mutual understanding at a neurological level.
Could the girls’ connection go beyond sensory impressions to higher thoughts, thoughts as simple as “I want water” or as complex as “I’m tired of ‘Good Night Moon’ ”? The family says that the girls often get up silently and suddenly and walk over to, say, a sippy cup, which Tatiana then immediately hands to Krista, who drinks from it. I did not witness any such incident; but if it happens as described, does one girl silently express her thirst to the other in the form of a higher thought? Does Tatiana somehow experience, instead, her sister’s basic sensation of thirst, but recognize it as originating elsewhere? Is the request whispered, inaudible or incomprehensible to anyone but the sister who is so closely linked?
The story of the girls drinking juice in the crib — one girl seeming to feel the other gulp — particularly intrigued Feinberg. “ ‘I felt Tatiana drink that,’ ” he said, musing on the idea of it. “Now, how crazy is that? I mean, seriously! This is beyond empathy — it’s like a metasensory experience. It’s like she has one consciousness and can witness another’s.”
As profound as it is to consider that each may witness the other’s consciousness, equally striking is their ability to maintain their individuality. In his book, “Altered Egos: How the Brain Creates the Self,” Feinberg describes patients with various split-brain syndromes, cases in which the corpus callosum, the part of the brain that serves as a bridge connecting one hemisphere to the other, is severed. In one manifestation, a patient might find that one of his hands is at odds, or all-out war, with the other. The unruly hand might throw a spoon or tear up money — actions that do not originate with any desire of which the patient is aware. Yet aside from the alien hand, the patient still feels essentially like himself: such patients “act, feel and experience themselves as intact,” Feinberg writes. Feinberg says the brain labors to create a unity of experience, knitting together our partial selves via numerous cortical mechanisms into a unified whole, into a sense of self, a consistent feeling of individuality and agency.
That the girls each have clear distinction, despite what he considers to be the likely leakage of sensory impressions, was telling to Feinberg. “With the split brain, you essentially cut the brain in half, yet the person feels and acts as a whole,” Feinberg said. “In these girls, they’re linked, yet each acts as a whole. It’s like a force of nature — the brain wants to unify.”
To the family, questions about whether the girls are two or one are so absurd as to be insulting. They are “two normal little girls who happen to go through life sharing a bubble,” Simms said. The family sees their unusual neural connections as something “neat,” as Louise, the grandmother, puts it, providing fascinating moments they notice but hardly lie awake at night contemplating. Of far greater concern to them is the girls’ physical health. “Every day when I wake up and they’re still alive — that’s a good day,” Simms told me.
The trip to Vancouver for medical checkups in January was reassuring in most regards. Their cardiologist was pleased to report that Tatiana’s heart seemed better able to handle her disproportionate burden of blood pumping. Their ophthalmologist was less sanguine. The girls have significant eye problems; to strengthen their vision, they need to wear eye patches and glasses but at the time of the appointment had not been doing so daily. The doctor warned the family with some gravity that the girls each risk becoming legally blind in one eye.
In some ways, the girls have clearly benefited from the family’s relaxed approach to child rearing: no one coddles them, and the girls are happy, affectionate and confident. But the ophthalmologist was concerned that not enough attention was being paid to some details of their care, and the dentist had similar concerns. Tatiana’s teeth are in such bad shape that she is scheduled for surgery this summer.
When the girls were younger, each experienced several seizures, which medication has since controlled. At an appointment with Hukin, their neurologist, she asked if they had any episodes recently (they had not, in more than a year), then performed a few quick tests. She put a red crayon in front of Tatiana, a purple one in front of Krista, then asked them to name the color. “Blue,” Tatiana said. “Red,” Krista said. Did they simply not know their colors? “They’re switching them,” their grandmother said; Hukin agreed it was a possibility. Hukin pulled a stuffed animal out of a bag, a turkey, and handed it to Tatiana on her right side, so that Krista could not see. “Krista, do you know what Tatiana has in her hand?” she asked. Krista paused. “Robin?”
Hukin, at the time, said nothing more than “very good.” But she considered this close-enough answer extraordinary, she later told me, and took it as clinical support for the sensory connection that Cochrane’s EEG tests had revealed.
Over the course of the days I spent with them, I witnessed the girls do seemingly remarkable things: say the precise name of the toy that could only be seen through the eyes of her sister or point precisely, without looking, to the spot on her sister’s body where she was being touched. But other times, the theoretical connection seemed to fail them. The family believes that making the effort to “tune in” sometimes tires them out. It’s possible that they are developing in such a way that their brains are trying hard to filter out input that originates from the other girl’s body.
David Carmel, a cognitive neuroscientist at New York University, suggested that even when the girls deliver right answers, the phenomenon could be explained by something other than a neural bridge. “If they’re really close, through minute movements that one makes — maybe a typical movement her sister cannot see, but can feel — the other sister intuits the association. Maybe she associates her sister’s reaction with a robin they once liked, not a turkey.” The connection then might be scientifically mundane, but a marvel nonetheless to the casual observer.
For the girls, Vancouver represents the outside world: they go to the hospital, they run around a McDonald’s at the mall. They are beloved at the hotel where they normally stay — their “hotel home” they call it — and bring bathing suits so they can float in the pool. On this trip, they ran up and down the hallways of the hotel, their high, sweet voices ringing out, giggling and giddy with liberation. Guests might have looked for a half-second longer than they ordinarily would, but they invariably smiled at the sight of the girls’ evident glee, just as they would at any other two small children.
The second evening they were there, a man in the hotel bar came out to the lobby to talk to them — he was a twin himself, he said, and had to meet them. He and his colleague smiled at the girls, asked them some questions, pronounced them adorable and returned to their waiting drinks inside the bar. But when the girls ran by the bar again an hour later, the same man came out with tears in his eyes. He had obviously been thinking about them and their family and his own. The year before, he said, he had lost his adult son to suicide. “So tell the mother they are blessed,” he said.
The message, relayed to Simms in the hotel restaurant, where the family was dining, did not particularly faze her: people often share their family tragedies with her. Simms understands the impulse, but feels they are trying to empathize with someone whose feelings they do not actually understand. “They feel sorry for us,” Doug McKay, the girls’ step-grandfather, said. “But we feel like we got chosen out of millions of people to be their parents. That’s better than the lottery.”
As I watched the girls negotiate their occasionally conflicting impulses at dinner, I thought of how my friend Peter Freed, a neuroimager and assistant professor of clinical psychiatry at Columbia, explained their possible experience of each other: “It’s as though the secretaries of Goldman Sachs and Lazard Frères have decided, without their bosses’ permission, to share certain visitors and executive memos with each other.” The executives in charge — the parts of the brain more directly involved in decision-making — would inevitably become frustrated. Every time that executive next door makes a decision, the results are “subtly influencing or altering the information the other has to work with,” says Freed, who also writes a blog called Neuroself about the construction of the self in the brain.
The frustration of one executive was on full display as the evening wore on. The girls were tired. It was late for them. Someone ordered them chicken fingers, and Krista took a bite. Suddenly, Tatiana made a face. “It’s too yucky,” she said, starting to cry. The mayhem level went up a notch, and Tatiana crawled under the table, wailing, as Krista was trying to pull her back up by the force of her neck. Krista tried to put the chicken finger directly into Tatiana’s mouth. “Krista likes it!” she said. “It’s yummy!” Tatiana spit the food out, crying: “Let me hide! Let me hide!” She covered her mouth with her hand. “Don’t make her eat it, sweetie,” said their grandmother, as Doug sighed in frustration. “Sissy eat it!” Krista said again, trying to push it in Tatiana’s mouth. Krista started pulling her sister’s hair, and then both girls were crying. Tatiana’s futile declaration rose above the sounds of the restaurant. “I am getting out of here!” Tatiana sobbed. “Let me alone.”
As would be true of any other two sisters, the girls’ relationship to each other and to their unusual connection is unpredictable. Their union could prove, as their grandmother predicts, a model of boundless, blissful empathy. The girls will show the world “true love,” she once said, tearing up. But their lives could also entail a barrage of confused impressions, with each girl having just enough of a sense of self to resent the intrusions of the other’s. Over time, would the girls increasingly tune out each other’s perceptions, with some kind of neural pruning doing the work that surgery could not? Or would some complicated, constant interplay of sensory input and response further fuse their personalities, rendering them ever more like one? Would they have any say in the matter?
Only one set of conjoined twins has ever made the adult choice to be separated, according to “One of Us,” a book by Alice Dreger that traces the history of cultural responses to conjoined twins. Ladan and Laleh Bijani were craniopagus twins who grew up in Iran. When they were 29, they were so desperate to live apart that they decided to take the 50-50 odds that they were given of surviving a separation. In 2003, in the hands of highly regarded surgeons in Singapore, they died after surgery. Despite the countless high-tech brain images they had produced, the surgeons were caught unaware by a major vein the women shared. They thought they had seen inside; but what they learned, tragically, was how little they knew about the union after all.
Tatiana and Krista will start kindergarten in the fall, their first major foray into the outside world. And their lives may soon change even more significantly if Chuck Harris, a talent manager who also manages the Schappells, has his way. Harris has been helping the family pursue a reality television show, not just about the girls (a detail upon which he insists) but also about the range of strong personalities living together in their small home. The decision to expose the girls to the gawkery of the American public is less fraught for the family than you might think — partly for financial reasons, but also because the girls are unlikely to have a normal childhood under any circumstances. The constant exposure, in some ways, would actually normalize them for the public, show them as they are, not as the people who pass them in malls perceive them.
The girls are used to showing off their tricks (so much so that at one point, Krista put her hand on my eyes and asked me to tell her what she was seeing). And they are infinitely proud of the small things they can do that were twice as challenging for them to learn as for someone who moves independently. They like to show how they can jump up and down, which they do like any other children, or climb into their crib, which they do like self-taught gymnasts.
The twins are most moving, however, when they are least aware of how profoundly different they are. One evening, shortly before the girls went to bed, I reached out and touched the tiny birthmark below Krista’s shoulder. “Don’t touch my pen mark,” Krista said. She touched the small dot of red and stroked it with her finger. Her sister, who has no birthmark there, stroked the same spot on her own body, in just the same way, drawing a line downward. She wore the same injured facial expression as her sister.
It seemed to me that at bedtime, the two girls were more like one than when they first arose, as if the labors of the day steadily eroded whatever barriers separated them. Sometimes Krista, the physically stronger of the two, seemed to morph before my eyes, no longer one of two, but instead, a sturdy girl carrying around an elaborate appendage she considered part of herself. Perhaps, in submitting, Tatiana felt a kind of relief, the kind we all feel when we cede control to someone we trust. But I also felt a sense of loss — where was Tatiana in all her totality in those moments?
The night I watched them doze off, both girls faced the bed, and then Tatiana started climbing up its side with her feet, using Krista as a kind of bracing post. From there, Krista jumped up to join her sister the usual way. Once their grandmother quieted the girls down in their oversize crib, they finally lay down on their backs. Each girl put an inner hand in her mouth, with four bent fingers, then let it fall back to her side. Each held a doll in her outer hand, threw it over her face and then pulled it away. They sighed simultaneously. Soon Krista was asleep; an instant later Tatiana was as well. They had both flung their inside arms up and over their own eyes, so that they were mirror images of each other at rest. Then Tatiana alone moved her arm away, and the girls drifted off for the night, to dream, together or apart, their secret dreams.
Susan Dominus (firstname.lastname@example.org) is a staff writer for the magazine. Her most recent article was about Kristen Wiig. Editor: Lauren Kern (l.kern-MagGroup@nytimes.com).
A version of this article will appear in print on May 29, 2011, on page MM28 of the Sunday Magazine with the headline: Inseparable.
Medical Miracle, Conjoined Twins Sharing a Brain
Tatiana (left) and Krista Hogan at home in British Columbia, Canada, with mom Felicia Hogan, left, and grandmother Louise McKay. “[The doctor] just sat there and he’s like, ‘Um, there’s no way to say it, but your girls are conjoined, and they’re conjoined at the head,'” recalled Felicia Hogan. “And he’s like, ‘I have no idea if these girls are going to survive. … You still have time to abort them.’ And right then I looked at him and said, ‘There’s no way that’s ever going to happen.'” The twins were born healthy and strong, weighing 12.5 pounds. (Courtesy Renegade Pictures)
While Tatiana, left, and Krista move together amazingly well, they don’t always agree on which way to go or what to do — and that can cause problems. “[Krista will] just get so frustrated with her sister that she’ll — the only way that she knows how to get it out is to scratch her sister,” mom Felicia Hogan said. “We try and get her to stop, but usually we’re 10 seconds too late.” (Courtesy Renegade Pictures)
The twins’ happiness is apparent to all around them — they laughed and played the entire day the “Nightline” crew was with them. “They … have this connection between their, what’s called the thalamus, between the thalami, one in each to the other,” said Dr. Doug Cochrane, the twins’ pediatric neurologist. “So there’s actually a bridge of neural tissues in these twins, which makes them quite unique.” It also makes them impossible to separate. Mom Felicia Hogan and others believe the connection has given the twins unique powers. “They share a lot of things normal conjoined twins don’t,” she said. “They have special abilities to see each other, see what each other’s seeing through each other’s eyes.” (Courtesy Renegade Pictures)
The twins’ condition has given them very real problems. Tatiana, the smaller of the two, has an enlarged heart and actually pumps much of Krista’s blood to her brain. The complications have led to surgeries and more worries. “We just kind of live today,” said mom Felicia Hogan. “We live within today. Forget about tomorrow, we’ll deal with tomorrow when tomorrow gets here.” For now, the girls are healthy and strong. (Courtesy Renegade Pictures)
For their grandmother, Louise McKay, the twins have been nothing short of a miracle. “No one would ever believe that I used to be a woman who couldn’t come out of her bedroom,” said McKay. “I had [a] panic disorder so bad that to do the everyday things was impossible. Until they came along. … I knew that [the twins’ mom] Felicia was going to need me, and they were going to need me, so I had to pull myself together.” (Courtesy Renegade Pictures)
Other Conjoined Twins Turn Sixteen
A paralyzed student walks again, with the help of a new technology
MIT Technology Review, May 24, 2011, by David Zax — Last Saturday, at UC Berkeley’s commencement, something like a miracle happened. That, at least, is the way one’s tempted to describe it. Technology had enabled the sort of healing common to Biblical narratives or reports from the shrine at Lourdes. A paralyzed man walked again.
His name was Austin Whitney. The 22-year-old graduating senior had lost the use of his legs in the summer of 2007, when, after having a few drinks, he crashed his car into a tree, severing his spine above the hips. He later quit drinking, mustered the will to go to college, and by the time he reached Berkeley for his sophomore year, found himself to be in the right place at the right time, reports the San Francisco Chronicle.
At Berkeley, a professor of mechanical engineering, Homayoon Kazerooni, had been working with a team for several years on a robotic exoskeleton. At first, Kazerooni’s Robotics and Human Engineering Laboratory–“the Kaz-Lab,” it’s been dubbed–had been developing its technology for very different purposes: military ones. A 2004 story from UC Berkeley News announced a “breakthrough” from the Kaz-Lab (ushered in with the help of a boatload of DARPA funding) that would enable a solder to wear a 100-pound exoskeleton and 70-pound backpack “while feeling as if he were lugging a mere 5 pounds.” The 2004 project cleared many of the initial research hurdles that would eventually help Austin Whitney walk. Kazerooni et al. taught their exoskeleton to be able to work dynamically with the wearer: “the control algorithms in the computer are constantly calculating how to move the exoskeleton so that it moves in concert with the human,” he explained at the time.
In 2005, the following year, Kazerooni spun out some of his research into a company called Berkeley Bionics, and a few years after that, Austin Whitney first got in touch with the Kaz-Lab. Whitney worked with the team for several years, helping them hone a design for paraplegics. The Chronicle lists a host of influences Whitney had on the final design: flatter feet for greater stability; locks on the hand controls; crutches with telescoping legs. So integral was Whitney to the process, the roboticists even nicknamed the exoskeleton “Austin.”
Other companies have developed similar technology to Kazerooni and co’s. Robotic exoskeleton research is actually a burgeoning field, and not just one limited to the Iron Man films. In January, the FDA approved an Israeli-made device called “Rewalk,” invented by a quadriplegic named Amit Goffer. And just a few weeks ago, the New Zealand company Rex Bionics made its first sale of a custom-robotic exoskelton to a man with a spinal cord injury named Dave MacCalman–a man who “holds the current World Record for quadriplegic pentathlon.” The Berkeley device, though, is cheaper than these, running just $15,000, or the cost of a high-end wheelchair. (Rewalk, by contrast, runs $50,000.)
And on Saturday, it was finally time to debut the technology. Whitney climbed aboard the exoskelton, flicked a switch, and moved one leg forward, then the next, to the sound of the audience’s cheers. In attendance were his parents and younger sister. “Four years ago, doctors told me I’d never walk again,” he told the Chronicle. Never say never.
Credit: Technology Review
A $10 million prize would go to the first device that can diagnose a range of diseases with the same accuracy as a team of doctors
MIT Technology Review, May 24, 2011, by Katharine Gammon — Last week, the X Prize Foundation announced a new $10 million contest to develop a portable device that can diagnose a wide range of diseases with the same accuracy as a panel of board-certified physicians.
The details of the contest are still being worked out, but the goal is likely to be a device that can perform a number of diagnostic tests and combine these with artificial intelligence to determine whether a subject has a particular malady. Such a device could help those who lack access to traditional medical services—and streamline access to specialty care in traditional medical treatment.
“Imagine a world where people get funneled to the right part of a complex health system at the right time,” says Eileen Bartholomew, a senior director at the X Prize Foundation. Bartholomew is working on designing the exact parameters for the prize, which will be launched in 2012. “And when consumers get into the health system, they come with data, to understand and guide their treatment.”
Bartholomew says that the contest may involve diagnosing a particular disease or could start with less ambitious challenges, such as performing a single test for a prize in the $1 million range. Winning the whole prize, offered in collaboration with Qualcomm, would likely involve an entry that could combine several complex technologies.
The range of biomedical information that can be monitored quickly is increasing, says Eric Topol, director of the Scripps Translational Science Institute. “We can monitor glucose continuously and we can measure heart rate and rhythm remotely,” he says. But, he adds, “we don’t have good ways yet for remote sensing for blood pressure or oxygen saturation.”
Topol says such a prize won’t be won until there is a critical convergence of technology, perhaps involving genomic sequencing and advanced imaging. Nick van Terheyden, chief medical information officer at Nuance Healthcare, thinks that such a convergence might not be too far away.
Van Terheyden says that a doctor would always be involved in some way in patient diagnosis. “This technology wouldn’t be a replacement, but an adjunct: a third party in the room that’s prodding and nudging,” he says. “Clinicians are overwhelmed with the amount of information that is out there.”
The regulatory environment could present problems for any such device. “The Food and Drug Administration has stated that it will not certify tech that makes a diagnosis directly,” said Ross Mitchell, the author of a study published last week that shows that strokes can be diagnosed with the aid of a smart-phone application with the same degree of accuracy as with a hospital computer.
Bartholomew says that because of FDA restrictions, the contest could lead to innovations that might only be used outside the United States.
A Nightshirt to Monitor Sleep
Sweet dreams: The Somnus sleep shirt has embedded fabric electronics to monitor respiration.
Credit: Nyx Devices
A newly developed smart shirt detects the wearer’s stage of sleep via respiration patterns
MIT Technology Review, May 24, 2011, by Emily Singer — What if your pajamas could tell you how well you slept? That’s the dream of startup Nyx Devices, which has developed a nightshirt embedded with fabric electronics to monitor the wearer’s breathing patterns. A small chip worn in a pocket of the shirt processes that data to determine the phase of sleep, such as REM sleep (when we dream), light sleep, or deep sleep.
“It has no adhesive and doesn’t need any special setup to wear,” says Matt Bianchi, a sleep neurologist at Massachusetts General Hospital and co-inventor of the shirt with Carson Darling, Pablo Bello, and Thomas Lipoma. “It’s very easy—you just slip it on at night,” says Bianchi, who has no formal role with Nyx Devices.
When people with sleep disorders spend the night in a sleep lab, they are hooked up to a complex array of sensors that monitor brain activity, muscle activity, eye movement, and heart and breathing rate. Nyx’s Somnus shirt dramatically simplifies this by focusing only on respiration. “It turns out that you can tell if someone is awake or asleep and which stage of sleep they are in purely based on breathing pattern,” says Bianchi. “That’s a much easier signal to analyze than electrical activity from the brain.”
During REM sleep, the respiratory pattern is irregular, with differences in the size of breaths and the spacing between them. Breathing during deep sleep follows an ordered pattern, “like a sine wave,” says Bianchi. “And the breath-to-breath differences are very small.” The lighter stages of non-REM sleep fall somewhere in between. “The motivation behind the shirt is to allow repeated measurements over time in the home,” he adds. Users can log their habits, such as coffee or alcohol intake, exercise, or stress, and look for patterns in how those variables affect their quality of sleep.
Analyzing sleep stages based on respiration is still considered experimental. But Bianchi is now testing the device on patients who come to his sleep clinic who are also assessed using standard technology, known as polysomnography. The team will soon begin home tests of the shirts to further validate its use outside of the lab. The company hopes to have a commercial product available by summer of 2012 for less than $100.
The shirt is part of a growing number of devices that people can use to monitor sleep at home. The simplest, including an iPhone app, use accelerometers to measure movement, giving a rough gauge of when people fall asleep and wake up. A more sophisticated consumer device that monitors electrical activity from the brain and muscles, called the Zeo, came on the market two years ago.
While Nyx envisions the shirt as a consumer product, Bianchi wants to use it for his patients. Bianchi’s previous research has shown that people with insomnia often underestimate how much they sleep, so he wants to determine whether giving them an objective way to measure sleep will help them reassess their condition and improve quality of sleep. “It will be a game changer for my clinical practice,” he says. “There are zero objective tools available to physicians to assess insomnia.”
A Nanotube Patch to Help Heal the Heart
Brown University researchers have created a tiny patch made out of carbon nanotubes that they hope will someday help regenerate heart cells. Credit: Thomas Webster at Brown University
Researchers create carbon nanotubes that mimic natural tissue and can regenerate heart cells in a dish
MIT Technology Review, May 23, 2011, by Karen Weintraub — A conductive patch of carbon nanotubes can regenerate heart tissue growing in a dish, according to preliminary research from Brown University. The patch, made of tiny chains of carbon atoms that fold in on themselves, forming a tube, conducts electricity and mimics the rough surface of natural tissue. The more nanotubes the Brown researchers added to the patch, the more cells around it were able to regenerate.
During a heart attack, areas of the heart are deprived of oxygen, killing muscle and nerve cells used to keep the heart beating strongly and rhythmically. The tissue cannot regenerate on its own, which disrupts the heart’s rhythm, weakens it, and sometimes leads to a repeat heart attack. Tissue engineers around the globe are searching for ways to regenerate or repair this damaged tissue using different types of scaffolds and stem cells.
Thomas Webster, an associate professor of engineering and orthopedics at Brown and senior author of the study, says his work is distinctive because he examined not just the muscle cells that beat, but also the nerve cells that help them contract and the endothelial cells that line the blood vessels leading to and from the heart. The fact that the patch helped regenerate all three types of cells, which function interdependently in the heart, suggests the newly grown tissue is similar to normal heart tissue. The research was published today in Acta Biomaterialia.
Jeff Karp, codirector of the Regenerative Therapeutics Research Center at Brigham and Women’s Hospital, says he’s impressed by Webster’s idea. But Karp cautions that the work is still preliminary. “It will be some time before we know how promising this approach truly is,” he says, because it has not yet been tested in animals.
Webster’s nanotube patch is just one of many approaches underway to help repair the heart. Many involve injecting stem cells collected from the patient into the damaged heart or implanting patches of muscle derived from these stem cells. He says the nanotubes could be used on their own, or as scaffolds for stem cells.
Webster’s team is now fine-tuning the nanomaterial to create a linear pattern to more closely mimic the pattern in natural tissue. Others have shown that creating this kind of structure can provide a natural scaffold that supports tissue strength and growth. The team is also working to make the patch as precisely as conductive as heart tissue, to see if that improves its function. The next step will be to figure out how to deliver the patch, which could be rolled up and transported to the heart via a catheter.
Of course, researchers need to do extensive safety testing before the technology can be used in patients. Unlike other materials used in tissue engineering, the carbon nanotube patch would not naturally degrade in the body. “The idea would be that the heart tissue would grow around these carbon nanotubes and they would continue to provide electrical stimulus to the heart,” Webster says.
To avoid regulatory delays, Webster says, he may try his carbon nanotube patch first on pets. Right now, heart attacks are usually fatal for the family dog, Webster says, because most animals don’t get diagnostic medical care or treatment, and have smaller hearts that have a harder time than human hearts compensating for damage. Treating pets “could be a way to get this technology out earlier,” he says.
Published May 2011 – Original Research
IMPROVING PATIENT CARE
A Survey of Health Information Exchange Organizations in the United States: Implications for Meaningful Use
+ Author Affiliations1. From Harvard Business School, Harvard School of Public Health, Brigham and Women’s Hospital, Harvard Medical School, and Veterans Affairs Boston Healthcare System, Boston, Massachusetts.
Background: To receive financial incentives for meaningful use of electronic health records, physicians and hospitals will need to engage in health information exchange (HIE). For most providers, joining regional organizations that support HIE is the most viable approach currently available.
Objective: To assess the state of HIE in the United States through regional health information organizations (RHIOs).
Setting: All RHIOs in the United States.
Participants: 179 U.S.-based RHIOs that facilitated HIE as of December 2009.
Measurements: Number of operational RHIOs, the subset of operational RHIOs that supported stage 1 meaningful use, and the subset that supported robust HIE; number of ambulatory practices and hospitals participating in RHIOs; and number of financially viable RHIOs.
Results: Of 197 potential RHIOs, 179 (91%) reported their status and 165 (84%) returned completed surveys. Of these, 75 RHIOs were operational, covering approximately 14% of U.S. hospitals and 3% of ambulatory practices. Thirteen RHIOs supported stage 1 meaningful use (covering 3% of hospitals and 0.9% of practices), and none met an expert-derived definition of a comprehensive RHIO. Overall, 50 of 75 RHIOs (67%) did not meet the criteria for financial viability.
Limitations: Survey data were self-reported. The sample may not have included all HIE efforts, particularly those of individual providers who set up their own data-exchange agreements.
Conclusion: These findings call into question whether RHIOs in their current form can be self-sustaining and effective in helping U.S. physicians and hospitals engage in robust HIE to improve the quality and efficiency of care.
Primary Funding Source: Office of the National Coordinator for Health Information Technology at the U.S. Department of Health and Human Services.
IMPROVING PATIENT CARE
Despite Government Incentives, Few Hospitals Able to Adopt Electronic Health Records
AnnalsOfInternalMedicine, May 2011 – Congress has allocated $30 billion to stimulate adoption and meaningful use of electronic health records. Meaningful use is defined by three central components: 1) electronic prescribing with decision support; 2) automated quality measurement; and 3) health information exchange (HIE). To be considered meaningful, providers must purchase technology and comply with metrics related to implementation. Regional health information organizations (RHIOs) are entities that facilitate clinical data exchange in a local area. With grant support from the federal government, RHIOs give local providers an efficient way to exchange data with other participating providers and stakeholders (laboratories, physician practices, public health departments, etc.) so they may comply with expert-derived criteria for meaningful use of electronic records. In 2009, investigators surveyed 179-U.S.-based RHIOs to assess the state of HIE. Of the 179 RHIOs surveyed, only 13 could support meaningful use of health information technology and none met expert-derived criteria for the comprehensive HIE needed to substantially improve care quality and efficiency. The author of an opinion piece in the same issue says that “meaningful use” policies are unrealistic from a provider’s perspective. The author recommends that policy makers take a new approach that focuses on improving usability and functionality before emphasizing widespread adoption. The author of an accompanying editorial says that no matter what the obstacles, it is time to leave paper records behind and move closer to full adoption of electronic records. He writes: “Our patients increasingly demand that we operate with at least the same level of service as their banks, car rental companies, and online retailers.” According to the author, these demands are perfectly reasonable in 2011.
It’s Time to Meaningfully Use Electronic Health Records: Our Patients Are Demanding It
- 1. Richard J. Baron, MD
+ Author Affiliations1. From Greenhouse Internists, Philadelphia, PA 19119.
In this issue, Hussain (1) offers a critique of “meaningful use” incentives as being top-down and provides a list of what he believes to be erroneous assumptions that undergird the program, including limited evidence of return on investment, effect on quality, or the superiority of a comprehensive approach over an isolated functionality approach. Others (2, 3) have compiled similar lists of “fallacies” and offered cautionary notes. The core of Hussain’s proposed alternative is that a successful approach should “build on the needs of providers first.”
As one who has experienced both the pitfalls and the promise of adopting an electronic health record (EHR) in the small office setting, I must respectfully disagree with Hussain’s position. In a dysfunctional payment system, return on investment means producing more low-value services, such as visits and lengthy progress notes (4), at a time when the public and purchasing community are clamoring for higher-value services, such as e-mail communication with physicians, assurance that health care disparities are addressed and eradicated, and continuous movement to improve population health status. As a practitioner, I would genuinely like to know whether African American women get mammography at the same rate as white women in my practice. Evidence suggests that they probably do not (5), and I would like to address such a disparity if it exists. With 2 minutes’ effort, I can consult our EHR and state with confidence that the rates are the same. I could no more do that without health information technology (HIT) than I …
This 100-word excerpt has been provided in the absence of an abstract.
Are Regional Health Information Organizations in Peril?
FierceHealthIT.com, May 23, 2011, by Ken Terry — A new Harvard study published in the Annals of Internal Medicine questions whether regional health information organizations (RHIOs) will ever be able to function on their own. What’s interesting about the survey is that its data is substantially the same as that in the latest survey of the eHealth Initiative, an organization that promotes RHIOs (better known today as regional health information exchanges). Yet the eHealth Initiative sees promise where the Harvard researchers see failure.
The Harvard researchers found that only 75 of the 197 known regional HIE initiatives were up and running, with only 25 not dependent on government grants. Similarly, the eHealth Initiative notes that last year, there were 73 operational initiatives, up from 57 in 2009, and 18 of the operational HIEs were financially independent.
The slow progress is viewed by the Harvard researchers as evidence that the regional HIEs were having trouble becoming self-sustaining.
May 23, 2011
A recent publication in the Annals of Internal Medicine has gotten quite a bit of attention in Health IT related media:
- Few RHIOs Meet Basic Criteria for Meaningful Use, Researchers Find
- Only 13 RHIOs Meet Meaningful Use Criteria
- Few docs, hospitals exchanging patient information
A quick summary of the reporting tells me that few if any actually read the report, since most only reported data available in the abstract. I won’t bother repeating the abstract, simply read it for yourself.
Age of the data? The Survey data was gathered between December 2009 and March of 2010. Where are we now? May of 2011. This study is based on data more than a year old.
On RHIO criteria for Meaningful Use, which is alluded in many of the article titles: There isn’t any, at least in the Meaningful Use Standards and Certification Rule or in the Incentives Rule. That’s right. There is NO criteria specified for what an HIE / RHIO must do under any of these rules. Nor are there any incentives being given to RHIOs/HIEs by CMS. Yes, there were public funds made available by ONC, about 1/2 a billion dollars. The study clearly acknowledges this, even if the reporting on it does not.
The next is the spin on financial viability. Of 75 organizations, 1/3 (25 / 75 = 1/3) are financially viable, and another 20 expect to be so in the future. Of startups with a product for sale in a specific sector, 1/3 are financially viable? That sounds like positive news to me, not negative — where do I invest?
Of new startups in a sector, over 40% (75 / 179) have a product in the market in the Health IT sector? That also sounds positive to me.
In that group of new startups, around 17% (13 / 75) meet the current market need (Meaningful Use)? Also positive, even if none meet the Comprehensive criteria that their expert panel put together. New markets rarely produce the “perfect” product in early years.
Some other factoids: The number of RHIOs continues to increase over time when compared to similar studies by the authors in mid 2008 and early 2007. The rate of increase seems to be slowing somewhat, but the number of RHIOs now defunct has been shrinking over that same time period. It is now less than half of its 2007 numbers. There are a couple of confounding factors that could influence the observed rate of growth, including the effect of ONC State HIE grants and Meaningful Use regulation on the industry, but the study doesn’t address that these.
What were the biggest challenges for RHIOs according to the study? In the core set, reporting quality measures, supported by slightly less than a quarter of the operational RHIOs. In the menu set, reporting to public health (immunizations, syndromic surveillance, and electronic laboratory reporting) as an aggregate was the weakest. A quarter of operational RHIOs were able to support that. A critical observation that I would make here is that public health needs to get more engaged with RHIO initiatives.
The strengths? Exchange of summary patient data (core) and laboratory reporting (menu-set) was supported by more than half of the operational RHIOs.
The authors’ conclusion? These findings call into question whether RHIOs in their current form can be self-sustaining and effective in helping U.S. physicians and hospitals engage in robust HIE to improve the quality and efficiency of care.
Yes, it does “call the question”, but the study doesn’t answer it, and it wasn’t designed to do so. Compare these findings to that of any other nascent industry that started in the last century. I think you’ll find that we are in better shape than some, and worse than others. The authors would be advised to compare this new industry with others. This is my biggest issue with the study. I didn’t find it badly done as other studies on Health IT were, just under-analyzed and very poorly reported.
If we want to understand how well RHIOs are doing, we should compare them to other new businesses that have been “invented” or even “re-invented” in the past few decades. One example would be alternative fuels or electric/hybrid cars — both recipients of government incentives. We could compare this initiative to the failure of similar initiatives in the past (see this article on CHINs from 1994), or to others being done internationally (e.g., Canada Health Infoway, or the NHS program). I’m sure others can find similar examples. Doing so would provide some analysis about how we are fairing compared to other industries and initiatives. It also might set some realistic expectations about how soon we can expect results and what those results might look like.
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Author of The Sky’s Dark Labyrinth Stuart Clark explores the early days of astronomy. Plus, Ian Sample discusses his explosive interview with Stephen Hawking, and we review a new science fiction exhibition
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Several times a year we are asked what Target Health does and what are our accomplishments. The following summarizes what has happened over the last 12 months.
In 2011, Target Health celebrated its 18th year as a New York City-based, full-service e*CRO with full-time staff dedicated to all aspects of the “paperless clinical trial” complementing our expertise in Drug and Device Regulatory Affairs, Clinical Research, Biostatistics, Data Management, Internet-based clinical trials (Target e*CRF®), Medical Writing, and Strategic Planning. We also provide fully validated software for clinical trials.
Highlights of the last 12 months include:
- Implementation of clinical trial programs in oncology, Gaucher disease and men’s health
- Implementation of the 100% paperless clinical trial
- Release of Target eCTR® (eClinical Trial Record; patent pending), eSource for clinical trials
- Implementation of the first direct data entry Phase 2 clinical trial in the pharmaceutical industry under a US IND. 2nd program to start in July.
- Risk-Based Source Data Verification (rSDV) Approaches: Pros and Cons (Drug Information Journal (2010; 44:745-756)
- The Final eFrontier – Applied Clinical Trials,( May 2010)
- Target e*CTR™ v 1.0 (electronic health record for clinical trials)
- Target e*Studio® v 1.0 (generates Target e*CRF EDC applications
- Target Document® v 1.6 (eTMF document management)
- Target e*CTMS™ v 1.3 (Clinical trial management system)
- Target e*Pharmacovigilance™ v 1.0 (Safety monitoring and generation of Form 3500A and CIOMS 1)
- Target Encoder® v 1.3 (MedDRA and WHO Drug coder)
- Four EDC regulatory approvals using Target e*CRF (NDA 1; PMA 1; 1 Canada 1; 1 EMA)
- Dr. Park on the FDA biomarker task force for Gaucher disease
- Three original IND submissions
- Target Health member of the CTTI Steering Committee
- Release of:
In the last 12 months, Target Health was directly involved with four regulatory approvals (2 US, 1 Canada and one EMA). There are now 20 unique products that used Target e*CRF® for their pivotal trials
- MAA – Firazyr (Shire Pharmaceuticals) EDC
- NDA/MAA – ellaOne® (HRA Pharma) EDC ; Monitoring; DM; Statistics; Writing
- CANADIAN DEVICE – AUGMENT™ Bone Graft (Biomimetic Therapeutics) – EDC
- NDA – ULESFIA – (Summers Laboratories, Inc./Sciele) – EDC; Monitoring; DM; Statistics; Writing; Toxicology; NDA (eCTD)
- NDA/MAA – DEGARELIX – (Ferring Pharmaceuticals) –EDC
- BLA – ARCALYST (Regeneron Pharmaceuticals) – EDC
- NDA/MAA – MENOPUR (Ferring Pharmaceuticals) – EDC ; DM; Statistics
- NDA/MAA – BRAVELLE (Ferring Pharmaceuticals) – EDC; DM; Statistics
- PMA – GEM 21S (Biomimetic Therapeutics) – EDC ; Monitoring; DM; Statistics; Writing
- PMA – REPEL CV (Synthemed, Inc. Approved) – EDC ; Monitoring; DM; Statistics; Writing; PMA (eCopy)
- PMA – Nine (9) Diagnostic Approvals (Abbott Laboratories) – EDC
- 510(k) – One (1) Diagnostic Approval (Abbott Laboratories) – EDC
- NDA Cystic Fibrosis – Submitted 2008 – Monitoring; DM; Statistics; Writing; NDA preparation
- NDA Gaucher Disease – Submitted 2009 – Monitoring; DM; Statistics; Writing; NDA preparation