By John Easton

Few people realize the important role that math plays in organ transplants. Complex formulas convert medical information about each patient, including diagnosis, age, and test results, into a single “allocation score” that determines who has priority when an organ becomes available. One factor not included in these calculators is proximity of the organ to a patient. More than a decade ago, the U.S. Department of Health and Human Services issued the “Final Rule,” intended to ensure that organs were allocated “based on medical criteria, not accidents of geography.” However, new data show that where a transplant candidate lives continues to influence access to donated lungs.

The current system for allocating donated lungs based on proximity and not on need appears to decrease the potential benefits of lung transplantation and increase the number of patients who die waiting, researchers said at an annual meeting of thoracic surgeons in Fort Lauderdale. Using data provided by the United Network for Organ Sharing (UNOS), Mark Russo and colleagues at the University of Chicago Medicine and Columbia University found that donor lungs were routinely allocated to less urgent, local candidates even when there were patients within the region but outside the local donor service who were in much greater need.

One unfortunate but not unusual example was a 27-year-old man with cystic fibrosis who was in an intensive care unit awaiting a lung transplant. He had a lung allocation score of 91 out of 100, one of the highest of such scores in the U.S. at the time. He was expected to die within a week without a transplant. An appropriately matched lung donor did became available less than 20 miles from the hospital where this man was waiting, but because the candidate was just outside of the donor’s local service area, two candidates from within the service area, each with an LAS in the 40s, took priority. One of these candidates received the organs. Five days later the 27-year-old patient died.

Such circumstances are not uncommon, said Russo, assistant professor of surgery at the University of Chicago Medicine.

“Ideally, a suitable donor organ would be available for every person who could benefit from transplantation,” he said. “Unfortunately, there remains a critical scarcity of donor organs. More efficient allocation of this scarce and precious resource could dramatically increase the overall benefit from lung transplantation.”

Among the 580 locally allocated double-lung transplants performed in 2009, 480 less needy candidates, or 83 percent of all double-lung transplants, received the organs even though a well-matched candidate in greater need existed in the region.

Twenty-four percent of such cases involved skipping over regional candidates with lung allocation scores — which range from 1 to 100, based on need and likely benefit — more than 10 points higher than the local recipient. More than 7 percent of the events involved a regional candidate with a lung allocation score (LAS) more than 25 points higher than the local recipient. Overall, 185 of the bypassed regional candidates ultimately died on the waitlist.

“We found that too often, and to many patients’ detriment, organs are allocated according to geography rather than urgency,” Russo said. When lungs go to less needy candidates within the local Donor Service Area and never become available to sicker candidates at the regional or national level, “this decreases the overall benefits of a transplant,” he said.

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By Meghan Sullivan

On her visit to the University of Chicago earlier this month, Megan Urry gave two very different talks, both backed with empirical evidence and arriving at clear, well-supported conclusions. However, while her afternoon talk to the astronomy department focused on her research of Active Galactic Nuclei, Urry’s earlier talk was on a subject more universal to academia: why are there so few women in science?

Expressing a sentiment that is common among young female scientists, Urry, Israel Munson Professor of Physics & Astronomy and Chair of Physics at Yale University, started out by admitting that as a student it was hard to imagine that the blatant discrimination of the 1950s and 60s could possibly affect her career in the 1980s. Harder still was the dawning realization that many of the obstacles were based more on gender than merit, though the symptoms of bias were more subtle than they had been in the past.

“It turns out that we scientists are a species that are of great interest to [sociologists],” Urry said, describing her research into the sociological literature on gender in the STEM sciences (science, technology, engineering, and math). “Sociologists understand very well why there are so few women in science.”

The fact that there are fewer women in science is beyond doubt. Data has repeatedly shown that women’s academic careers progress more slowly and they are less likely to be hired into academic positions, where they are then less likely to get tenured. Such trends become obvious when the numbers of PhDs awarded to women and the number of female faculty members hired are compared; women are lost between each level (described previously by Nancy Hopkins as the “Leaky Pipeline”).

“Our scientific fields are not fully utilizing the talent that is out there,” Urry pointed out. “We are basically dipping deeper into the talent pool of men instead of finding the outstanding women that are out there…if we hire a smaller fraction of women as professors than there are women with PhDs we have basically thrown away talent.”

To address why women were underrepresented in these fields, Urry debunked several myths surrounding women in science, key among them being family status.

“Family is the number one hypothesis that people come up with when I talk with them about these issues,” Urry admitted with some frustration. “But the truth is this cannot be the explanation.”

Considering that 70 percent of American women with children under the age of two work, it seems unlikely that having children would uniquely affect women in science. A well-known study by Mason & Goulden titled “Do Babies Matter?” is often interpreted as concluding that if women have children, they will fall behind. In fact, women who have children are more likely to become part-time employees. This, Urry said, certainly affects women’s progress in academia. However, among women who stay full time, those without children are not more successful than women with children, indicating family status cannot define how women succeed.

“Having a family is hard, but it’s so much easier to do it as a grad student, a post doc, a tenured professor than it is - for instance - to do it as an employee at Walmart,” Urry said. “Grad students at Yale make more than your average Walmart employee. You have control of your hours, work, and you can get help pretty easily.”

Since family status is an unsupported explanation for the gender imbalance, the issue of scientific aptitude often arises. A study published by the National Academy Press entitled “Beyond Bias and Barriers” reported findings on women’s ability, persistence in science, evaluation by peers, and reviewed strategies that effectively kept women in science. By almost all measures there was no difference in ability, the one exception being rotation of 3D objects in space, which seems to be more attributable to childhood play than inborn aptitude.

“There are no measured differences between the abilities of men and women that could possibly explain the large gender gap seen in science professions,” Urry stated.

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By John Easton

Even in the court of ethics and medical professionalism, there’s nothing wrong with the occasional honor or award. On day two of the conference, the Maclean Center awarded its first Prize in Clinical Ethics and Health Outcomes - at $50,000, the largest such prize in the ethics field - to John Wennberg, the Peggy Y. Thomson Professor for Evaluative Clinical Sciences at Dartmouth Medical School and founding editor of The Dartmouth Atlas of Health Care.

In 2007, the journal Health Affairs named Wennberg as “the most influential health policy researcher of the past 25 years.” Fitzhugh Mullan, former director of the Bureau of Health Professions in the U.S. Department of Health and Human Services, described Wennberg as “both the Christopher Columbus and the Johnny Appleseed of clinical variation,” meaning he not only discovered the field but also brought it to the attention of the medical and health policy communities.

“While John Wennberg is regarded as a health services researcher,” said Mark Siegler, MD, director of the MacLean Center, “his fundamental work on patient preferences and shared decision making highlight his contributions to the field of clinical medical ethics.”

The Dartmouth Atlas examines the patterns of medical resource intensity and utilization in the United States, with special emphasis on end-of-life care, inequities in the Medicare reimbursement system and the under-use of preventive care.

From the start, it has brought surprises, according to Kenneth Polonsky, dean of the Division of the Biological Sciences and the Pritzker School of Medicine at the University of Chicago, who introduced Wennberg. The report comprehensively documented the “striking differences” in the amount of health care provided in different regions, adding the provocative observation that the amount or cost of care delivered did not correlate with good outcomes.

Joking that “when you get paid so much to give a lecture, you get a little nervous,” Wennberg spoke about the early days of the Atlas and how their studies of practice variation in the mid-1970s “challenged the notion that science was driving utilization.” Instead, decisions about surgical treatment for benign prostate hyperplasia revealed what the researchers called “surgical signatures,” patterns of practice based on the beliefs of individual surgeons.

When Wennberg’s team developed short, balanced videos to show to patients, explaining the risks and benefits of surgical treatment and showing taped interviews with two physicians who had made different decisions, patients were much less likely to choose surgery. “This was the first evidence,” he said, “that engagement of patients could lead to the right utilization rate.”

However, only about 25 percent of medical care turns out to be so “preference-sensitive,” forming what Wennberg calls “little islands of rationality.” Studies of end-of-life care found a far more limited role for shared decision making between patients and their caregivers. Instead, demand for resources appears to be driven by supply. Empty hospital beds and unused capacity strongly correlate with increased medical care late in life. For example, more than twice as many patients were admitted to an intensive care unit in the last six months of life at UCLA compared to Dartmouth.

Wennberg described the four goals of the Atlas’s end-of-life team for the next five years: to better inform patient choices, improve the science behind these decisions, promote organized care and constrain undisciplined capacity spending. At this point, he said, “we don’t need more research, we need more action.”

Another session at the conference focused on a very different book, not an atlas but a historical novel, based on true events and real people. Open Wound: The Tragic Obsession of Dr. William Beaumont, by former ethics fellow Jason Karlawish, a professor of medicine and medical ethics at the University of Pennsylvania, examines the professional and ethical issues raised by William Beaumont, a 19th-century surgeon who cared for - and experimented on - a patient with a shotgun-blast-induced hole in his stomach. Beaumont saved the patient’s life, but then used this wound, which never quite healed, as a window to decipher the mysteries of digestion.

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Every patient wants their doctor to be a professional. But the broader concept of “medical professionalism” is not a cut-and-dry matter, as it opens the door to debates over how physicians interact with politics and society, the regulation of doctors’ ethical and legal behavior, and the role of the physician in the new world of health care. Those are large enough questions to warrant a year of discussion in the MacLean Center for Clinical Medical Ethics Seminar Series, and a centerpiece slot at the 23rd annual Dorothy J. MacLean Fellows Conference, held last week.

“In recent decades, there has been a renewed focus in medical education on professionalism being seen as a way to improve patient care, strengthen the doctor-patient relationship, reduce conflict of interest, improve physician self-regulation and ultimately to strengthen the alliance between medicine, patients, and society,” said Mark Siegler, Director of the MacLean Center, in his opening remarks.

If professionalism is too abstract, the themes on the first day of the conference could be simplified as what a doctor should and should not do in today’s tumultuous health care waters. Driving that instability is the ever-growing chunk of the world economy eaten up by the health care industry, said the conference’s first speaker, Arthur Rubenstein of the University of Pennsylvania (and formerly of UCMC). The United States spent $2.3 trillion on health care in 2009, he said, roughly equivalent to the GDP of France. With economies slowing around the world, those costs are unsustainable, and physicians must come together as a profession to work with patients and policymakers to find solutions that benefit all parties.

“We need to do something about that as a medical profession. If we don’t, the future is going to be quite problematic,” Rubenstein said. “If in the financial crisis which we are now surely in, at both the state and national level, the medical profession puts their own interests before those of patients - particularly the poor and elderly patients - our now privileged position in society will be given up, and our contract with society will be changed for the worse, and we may not recover in the foreseeable future.”

Participation was also one take-home message of Christine Cassel’s talk, which emphasized how the classical definition of the medical professional would have to evolve in the new health care landscape envisioned by last year’s Affordable Care Act. Cassel, the president and CEO of the American Board of Internal Medicine (and another former UChicagoan), said that the three primary goals of health care reforms are affordability, access, and quality. Creating a system that addresses all three will require balancing the intrinsic motivations of physicians to help patients with the extrinsic motivations of financial and regulatory oversight. A new kind of medical professionalism that accepts a health care system based around technology and teamwork will help the field achieve that balance with a minimum of pain, Cassel said.

“To my mind it’s a new kind of professionalism that leaves behind these old ideas of what the nostalgic profession was, and becomes committed to collaboration, evidence, measurement, and transparency so that it’s not at odds with accountability, but in fact becomes accountability,” Cassel said. “This is a challenge for many of us, and it’s going to take change.”

A case study of how that change can happen was presented by Troy Brennan, Chief Medical Officer for the pharmacy chain CVS. Brennan recapped efforts over the last decade to eliminate gifts from pharmaceutical companies to physicians at academic medical centers. While this practice was once thought to be innocuous by many physicians, others argued that it created a conflict of interest. In an example of extrinsic regulation to alter physician behavior, the American Board of Internal Medicine proposed that academic medical centers regulate these interactions between Big Pharma and physicians - an initiative supported by medical students. As a result, physician-industry relationships dropped, though a CVS study is still collecting data on whether that has affected prescription behavior, driving more doctors toward prescribing generics instead of brand name drugs.

Preserving physicians’ integrity and reputation is important for the role of the medical professional proposed by Paul Starr of Princeton University. In a time of ideological polarization and lack of trust in public institutions, it’s important for professionals to bring trustworthy knowledge to the public debate, Starr said, citing the recent Republican debate where candidate Michele Bachmann claimed a link between the HPV vaccine and mental disability.

“When prominent political figures make uninformed statements on national television about the effects of a vaccine, or distort the findings of researchers on a cancer screening test, then politicians may have a real, substantial impact on public understanding,” Starr said. “It is just at those moments when the scientific community should hold its ground and insist on abiding by the evidence.”

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Biology used to be the scientific discipline where data was at a premium, a rare resource painstakingly collected in the field or the laboratory. But today’s biologists are confronted with a flood of data, a fire-hose torrent of genetic and clinical information that only builds with the spread of fast sequencing and electronic medical records. But as these databases fill terabyte after terabyte of computer storage, the successful transformation of that data into practical information about human biology and disease has lagged behind. Genome-wide association studies (GWAS) have  explained only a small percentage of disease heritability, clinical records remain largely unstudied on a large scale, and the complications created by environmental influences and multi-gene disorders have frustrated scientists.

Into this impasse comes a new multi-institutional project based at the University of Chicago: the Silvio O. Conte Center, funded by a nearly $14 million combination of grants from the National Institute of Mental Health and the Chicago Biomedical Consortium. Led by Andrey Rzhetsky, professor of medicine and human genetics at the Medical Center, the collaboration of 15 scientists from 7 institutions will apply the power of advanced computation and data-mining to the growing tide of data collected about neuropsychiatric disorders. The trick will be to not just focus on one database, be it genetics or environmental factors or clinical outcomes, but all of them at once, creating a higher-resolution image of what goes awry in the brain to cause mental disease.

“A great deal of data already exists, yet nobody is already looking at it the way we plan to do and we have very smart people on this team,” said Rzhetsky, who is also a senior fellow of the Computation Institute at the University of Chicago and Institute for Genomics and Systems Biology. “When you have multiple communities that partially study the same subject you can get a kind of three-dimensional picture of a phenomenon.”

Rzhetsky has previously demonstrated the promise of data-mining - the discovery of patterns and information in large pools of data - using clinical records and scientific literature. In a 2007 study, his team examined 1.5 million patient records and found significant overlap between mental disorders such as schizophrenia, bipolar disorder, and autism, suggesting a similar overlap of the genetic factors that cause these conditions. Two years later, Rzhetsky and colleagues applied text-mining computation to the scientific literature database PubMed, creating a network of genes and biological interactions associated with cerebellar conditions such as ataxia and degeneration.

Beyond demonstrating the potential of data-mining, those studies also shed light on the hazy borders separating different psychiatric disorders. While the overlaps could complicate psychiatric diagnosis in the clinic, they might also make the disorders susceptible to the multi-faceted approach proposed by the Conte Center.

“Most studies are done one disorder at a time, and that’s like studying the trunk or the hoof or the tail of an elephant; you might miss the big picture,” said Benjamin Lahey, Irving B. Harris Professor of epidemiology at the University of Chicago and a co-investigator at the Conte Center. “This project will enable us to look at things in a way that has never been done before, at a scale that dwarfs anything that’s ever been done.”

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A visit to any casino will quickly demonstrate how vices clump together. At any hour of the day or night, many of the customers sitting intently in front of a slot machine will also be smoking cigarettes or drinking a cocktail. Sadly, addictions to these pursuits also tend to go hand in hand, with higher rates of compulsive gambling observed in people addicted to drugs such as cocaine and alcohol. Furthermore, when people perform gambling-like tasks while their brain is scanned by an MRI machine, the games activate areas of the brain also stimulated by drugs of abuse - perhaps accounting for the addiction-like behavior of gamblers.

“If you’ve ever been to a casino, and you watch people using slot machines, you’ll surely have noticed the sense of compulsion to put the next coin in, even though you get no money back most of the time,” said Paul Vezina, professor of psychiatry and behavioral neuroscience at the University of Chicago.

But does one bad habit truly lead to the other? In a recent paper for the journal Behavioural Brain Research, a team from Vezina’s laboratory offers evidence that the unpredictability crucial to gambling’s appeal can cross over to enhance the effects of abused drugs. By adapting self-administration, a common tool used to model drug-taking in animal research, to partially replicate the random pay-off of a slot machine, graduate student Bryan Singer was able to test whether gambling-like behavior influences a rat’s subsequent response to the drug amphetamine. The result suggests that gambling may have properties similar to a “gateway drug,” as an activity that can increase the abusive potential of drugs.

First of all, how do you simulate the casino experience for a rat? Self-administration - where the animal presses a lever to receive a food or drug reward - is fairly similar to a slot machine to begin with. In a self-administration protocol, the researcher sets the number of lever presses required before the reward is given. A “fixed ratio” of 5 means that the rat would have to hit the lever five times before receiving a food pellet or rewarding hit of cocaine. But with a “variable ratio” setup, unpredictability is introduced into the process. If the variable ratio is set to an average of 5, anywhere from 1 to 10 presses might be required to produce reward, a figure that changes every time like the random number generator of a slot machine. So while the rat does not have anything at stake other than the physical work it takes to hit the lever, it never knows when it will hit the “jackpot.”

“One of the main differences is that for a slot machine there’s a good chance you’re going to lose money, but here there’s little negative aspect,” Singer said. “It’s like a very loose slot machine.”

In this experiment, Singer and co-author John Scott-Railton used the non-caloric sweetener saccharine as a reward - a sweet treat that rats will work to acquire without ever getting full or intoxicated. For 55 days, half of the rats worked for saccharine under fixed ratio conditions and half worked under the variable ratio setup. Then, after a two week break, each rat was given a small dose of amphetamine, and researchers measured their activity as the dosed rats ran around their cage.

Even though the rats in each group received the same amount of saccharine and did the same amount of work during their lever-pressing careers, those exposed to the random rules of the variable ratio exhibited a stronger response to amphetamine. The result suggests that unpredictable rewards may prime the same brain areas hijacked by drugs of abuse, producing a stronger behavioral response - known in the field as sensitization - even upon first exposure to a stimulant drug.

“What this paper is showing is that unpredictable conditions may cause sensitization,” Vezina said. “There are activities that may play just as important a gateway role as drugs, and gambling may be one of them.”

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When the drug ezetimibe was approved in 2002, it was hailed by its makers as a new tool for lowering cholesterol and fighting heart disease in patients. In clinical trials, the drug (marketed by Merck as Zetia) lowered levels of low-density lipoprotein or LDL, the so-called “bad cholesterol” associated with atherosclerosis, the thickening of blood vessels that can lead to stroke and heart attacks. Though LDL was also the target of the highly successful statin drugs, Zetia passed the FDA because it offered an alternative mechanism for reducing cholesterol levels, and soon was making billions of dollars a year for the pharmaceutical company. But as more and more people took the drug and more research was conducted, the scientific data did not match the marketing hype, with large clinical trials failing to find a protective effect against cardiac events and even finding in some cases that it made blood vessels thicker.

Sadly, the story of Zetia is not that unusual. In recent years, other drugs such as Vioxx and Redux have been come under fire when dangerous side effects or underwhelming clinical results became apparent after approval. These high-profile failures (and the inevitable ensuing lawsuits) have threatened to slow drug development, as pharmaceutical companies are understandably nervous about investing big money in a potential dud. Expensive new drugs that offer little to no improvement over pre-existing treatments also cause damage, by needlessly raising health care costs. So what changes can we make to the U.S. health care system to promote the creation of innovative new drugs worth their price tag?

Three authors, including G. Caleb Alexander of the University of Chicago Medical Center, proposed five not-so-easy fixes in a recent issue of Annals of Internal Medicine. Their strategy includes reforms of the FDA’s drug approval process, drug labels, and the payment strategy of insurance companies on the other. For drug companies that may not like the extra squeeze, incentives can be built into the system to sweeten the deal for developing more effective treatments and drugs for currently untreatable diseases. “Despite these challenges, the United States has a long history of successfully improving the safety and value of prescription drugs, and substantial progress can still be made,” the authors write.

1. Raise the Bar

One way to prevent surprises when new drugs are transferred from clinical trials to the real world is to require that higher standards are met before approval. Instead of just demonstrating the drug’s superiority to a placebo treatment, researchers could be required to prove that the new drug is better than the current standard of care. Clinical trials should also be designed to measure effects on clinical outcomes, such as atherosclerosis, rather than physiological measures, such as LDL.

2. Semi-Approval

For an FDA approval process that some already criticize as to slow, these additional requirements could further gum up the works. To allow time for this more thorough review, the authors suggest a more nuanced FDA approval, adding a new “conditional” approval stage where the drug could be available with strings attached. For instance, direct-to-consumer advertising could be restricted while more data is collected on the drug’s effects in a larger, more diverse population.

3. The Patent Carrot for the Regulatory Stick

For the pharmaceutical companies, all of the above is a nightmare that would extend the cost and time it takes to bring a new drug to market. As an olive branch, the paper suggests extending the patent exclusivity for new drugs that meet these most stringent standards, giving the pharmaceutical company more time to collect profits before generics are allowed to reach the market. One suggestion is to start the patent clock when the drug is approved, so that the FDA process does not eat up valuable months and years of exclusivity for the drug’s developer. Such a measure would also ease up the pressure on the regulators, reducing “the tension between the ticking clock of patent protection and drug safety,” the authors write.

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Since the Roe v. Wade decision of 1973, abortion has been a woman’s legal right (with ever-changing state-specific restrictions) in the United States. But one factor often trumps the legal status of abortion: access. Though abortion training is required for medical residents studying to become obstetrician-gynecologists, physicians are not required to perform the procedure or even to refer a patient to a ob-gyn who will. That voluntary basis can create pockets of the country where access to an abortion provider is a larger obstacle than any legislation.

As a window into these access issues, a team led by Debra Stulberg, assistant professor of family medicine, conducted a survey of more than 1,000 Ob-Gyn physicians on their experience regarding abortion requests and providing the procedure. Their answers, published in Obstetrics & Gynecology, reflected how commonly ob-gyns are approached for the procedure - 97% of respondents said they had encountered patients seeking abortions. However, only 1 in 7 (14.4%) of those surveyed said that they had provided abortions themselves.

The data collected from other question on the survey allowed Stulberg and her colleagues to paint a picture of who was more or less likely to provide an abortion. Some of the results were unsurprising: female ob-gyns were more like to perform the procedure than men, those with strong religious beliefs were less likely to provide abortions, and those who worked at Catholic hospitals were very unlikely to provide the option to their patients. Geographically, ob-gyns from the Northeastern, Western, and urban regions of the United States were more likely to have performed an abortion, while those from the South, Midwest, and rural areas were less likely. That could contribute to large areas of the country where there are limited options for women seeking abortion - regions that happen to be where abortion providers commonly experience harassment, the authors note.

Breaking down the responses by age also reveals an interesting U-shaped curve. The most likely age group to provide abortions was ob-gyns 35 years or younger. But the second most likely were those aged 56-65 years old - the generation that was in medical school around the time of the Roe v. Wade decision. As that age group heads toward retirement, the number of abortion providers could drop even lower, the authors speculate, should the younger generation not pick up the slack. For responses to this data from both sides of this always polarized issue, see U.S. News & World Report. More coverage can be found at the Los Angeles Times, NPR, and the State Column.

Our New Facebook Home

Thanks to the hard work of our colleague Matt Wood, the Medical Center has a new Facebook page! The page will be updated daily with articles and videos about Medical Center care and research, including the occasional article from this here blog. If you are so inclined, please visit the page and click the all-important Like button.

Elsewhere…

It sounds counter-intuitive: burning the smooth muscle of the lung to improve symptoms for people suffering from severe asthma. But bronchial thermoplasty is a promising new procedure, and has worked for patients like swimmer Stephanie Manikas, featured in this CBS Early Show piece from Thursday. Manikas’ physician, the Medical Center’s Kyle Hogarth, has previously explained the procedure as part of ScienceLife’s Dr. FAQ series.

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Muslims are the fastest-growing religious minority in the United States, with over 7 million Americans declaring themselves as followers of Islam and more than 2,000 mosques nationwide. But in spite of the numbers, little data has been collected about American Muslims’ beliefs about health and disease, or their experience in the U.S. health care system. One reason for this also lies within the demographics, as American Muslims are a particularly diverse minority, containing South Asians, Arabs, and African-Americans, as well as both recent immigrants and long-term, multiple-generation natives. With such a wide variety of members from different ethnic, racial, and socioeconomic backgrounds, how does one pin down the health care experience of American Muslims?

The only way, thought Aasim Padela, was to talk to all of them - or at least representatives from each of the major groups in the American Muslim community. For his recent report, “Meeting the Healthcare Needs of American Muslims,” Padela and his colleagues at the Institute for Social Policy & Understanding went to the rich Muslim community of southeastern Michigan, one of the largest Muslim populations in the United States. Reaching out to multiple mosques and holding focus groups with over a hundred participants, the group looked for common denominators of people who share the Islamic faith, but perhaps little else.

“We looked at American Muslims as a conglomerate and asked what was common,” said Padela, assistant professor of medicine and director of the Initiative on Islam and Medicine at the University of Chicago. “We wanted to talk to each of these three large groups, which we know comprise the majority of American Muslims, and look at what’s similar in terms of health care challenges and beliefs. What we found as similar is something we can attribute to their faith.”

The final product was a fascinating piece of medical anthropology, a snapshot of how American Muslims view their own health or illness, the struggles they face in the U.S. health care system, and their solutions for establishing stronger communication between their faith and their medical caretakers. In an environment where physicians are expected to meet their patients halfway on ways to prevent and cure disease, understanding the perspective of a community that is already large, and growing larger, is an important first step toward improved care.

One primary finding of the report describes the “medical narrative” of American Muslims, their views on where disease comes from and the most effective strategy for fighting it off. Many participants in Padela’s focus groups believed that God takes an active role in health and illness, perceiving conditions from a winter flu to breast cancer as divinely ordained.

“Most participants perceived illness through a religious lens as predestined,” the authors wrote, “a trial from God by which one’s sins are removed, an opportunity for spiritual reward, a reminder to improve one’s health, and sometimes a sign of personal failure to follow Islam’s tenets.”

One might think that treating such a patient would be difficult for a physician, faced with a patient that believes they are being religiously challenged through their illness. But Padela said that a closer understanding of Islam refutes these fatalistic notions, and that most Muslims agree that health issues are best confronted with a combination of spiritual and medical healing.

“God also says to take care of your body, and that means you have to go to people in this world,” said Padela, who conducted the research as a Robert Wood Johnson Foundation Clinical Scholar at the University of Michigan. “Doctors are a part of that, but only a part. Imams play a big role in healing, in the sense that they help you understand disease and illness.”

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Last November, a barrier was broken in the prolific Bollywood film industry of India. A film called Dunno Y featured the first on-screen male-male kiss - a provocative scene in a country that only the year before repealed a law making homosexuality illegal. Many tagged the film as India’s version of Brokeback Mountain, a controversial and progressive step in depicting male-male romance in popular culture that reflected a growing social acceptance of homosexuality. But the full significance of those cultural changes in the South Asian country have yet to be studied, and will require perspectives from law, anthropology, medicine, and more.

Just such a discussion will take place this Saturday morning at the University of Chicago and on the internet in the roundtable event, “Sexual Identity, Health and Stigma in India: Traditional Statuses and Western Influences.” Organized by John Schneider, assistant professor of medicine and epidemiology at the University of Chicago Medical Center and director of Global Health Programs, the discussion will be available worldwide on a webcast broadcast by the UChicago Facebook page, the Global Health Initiative website, and here on ScienceLife (watch this space).

“What I tried to do is bring together scholars from a number of different disciplines to make this a truly interdisciplinary discussion,” Schneider said. “I want it to be like a Sunday morning news program - but smarter - where a topic area is chosen and everybody fires away with their background about it, leaving room for remote viewer input.”

The central topic of whether sexual identity in India is truly shifting can be addressed from any number of angles. There’s the legal status of homosexuality after the 2009 repeal of Section 377 of the Indian Penal Code by the High Court of Mumbai. Or the sexual and mental health consequences after centuries of stigmatization of men having sex with men, including the spread of HIV and other sexually transmitted diseases. Or the pop culture ripples, such as Dunno Y, that may reflect changing attitudes and sexual roles in Indian culture. All of which are set against the backdrop of a country rapidly modernizing and playing an increasingly powerful role in global economy and society.

“I think that India is going through tremendous social and cultural changes as it emerges from what would be, in old terms, a less-developed economy to now becoming something of an economic powerhouse,” said Niranjan Karnik, assistant professor of psychiatry and behavioral neuroscience and another participant in the event. “This has the potential to really change the dynamics of the society and change the way people see themselves and behaviors.”

The participants in the roundtable are all accomplished researchers and experts on India. The keynote speaker, Lawrence Cohen of the University of California, Berkeley, studies medical anthropology in the country, and has written on homosexuality, aging, and organ transplant markets. Philip Kumar and Sanjay Srivastava are researchers based in India studying sexuality and advising the government on health issues related to men who have sex with men. Schneider himself has an extensive project underway in Indian truck drivers, where he is using cell phones in building a network of men who have sex with men to study their behavior and identify potential peer outreach points.

“One of the issues we are looking at is what changes in sex position roles might be occurring over time in India,” Schneider said. “Is a Western identity rubbing off on India, or is it developing a new identity? My work will help address those questions because of the cell phone network data that triangulates often sensitive self-reported data,” Schneider said.

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It has been a couple months since the end of the spring quarter, and the with it the end of many of the Medical Center’s weekly lecture series. But a recent batch of videos posted to the website of the MacLean Center for Medical Ethics brought a whiff of the school year to the dog days of summer. The videos feature a selection of the lectures from the third and final segment of the 2010-2011 theme, “Health Disparities: Local, National, Global,” [pdf] and run the gamut of expert perspectives from libertarian law and the insurance industry to black history and medical education. If you are going through lecture withdrawal or want to get excited for next year’s MacLean Center series (“Medical Professionalism and the Future of American Medicine” [pdf]) beginning in late September, enjoy these videos.

The Case for Health Disparities - Richard Epstein, University of Chicago

Richard Epstein’s annual contribution to the seminar series is always a combustible reaction, where the classically conservative law professor’s market economics conflict with the more liberal lean of the regular audience. This year’s topic was especially flammable - after a couple dozen lectures on the struggle to reduce the health care gap in the United States and around the world, here was Epstein arguing for preserving those very same inequities. Beyond the deliberately provocative title, Epstein’s characteristically off-the-cuff speech recommended that health care reformers should choose a different target - instead of minimizing the health care differences between top and bottom, push policies that support growth and innovation for all patients, rich or poor, while encouraging charity instead of coercive giving.

Future Directions for Health Equity - Anne Beal, Aetna Foundation

The Aetna Corporation is in the business of providing health insurance to Americans. The Aetna Foundation is the charitable arm of that company, dispensing grants and funds to research ways of improving the health care system and reducing costs. Researcher and author Anne Beal is the current president of the Aetna Foundation, and focused her talk on reducing costs and inequalities via improving the quality of health care in America. “Giving people the right care at the right time and preventing disease is an amazing way for us to really rein back a lot of these health care costs,” Beal said. [Original Article]

“Without Health and Long Life All Else Fails”: African-Americans and the History of the Elimination of Racial Disparities in Health and Health Care - Vanessa Northington Gamble, George Washington University

Obviously, racial disparities in health care are not a new phenomenon. Efforts to improve the health of African-Americans also didn’t begin with the civil rights movement, though the strategies employed by the disparity-fighters of the segregation era were very different from today.

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There’s something quaint and charming about a family business, where multiple generations work shoulder to shoulder to keep an enterprise afloat. But when the business in question is academia and the salaries are paid by tax dollars, suddenly keeping it in the family carries the stink of nepotism. In the public universities of Italy, it’s no secret that nepotismo is the rule, not the exception. Despite repeated legislative efforts to reform university hiring, scandals such as the one at University of Bari’s economics department - where a father, two sons, and five grandchildren all work together - remain a perennial problem in Italy.

Stefano Allesina, an assistant professor of evolution & ecology at the University of Chicago, witnessed the damaging effects of these unfair hiring practices as a student in Italy. While pursuing his PhD, Allesina’s advisor told him not to waste his most productive years trying to get a job in Italy - advice he followed in emigrating abroad to the United States. Many of his Italian peers followed similar paths, while those who stayed behind languished in limbo waiting for scarce tenure track positions to open. Frustrated with the broken Italian system, Allesina decided to apply his talents for creating computational models in ecology to measuring the full scope of nepotism in the university system of his home country.

“In Italy, there is an enormous brain drain,” Allesina said. “Italy is losing so many graduate students to other countries, it’s unbelievable. It’s because the hiring is extremely slow, complicated, and not really based on quality…and I think these kind of hiring practices contribute a lot to this brain drain and the fact that Italian universities are not ranked very high internationally.”

In a study published yesterday in PLoS ONE, Allesina used a public directory containing the last names and fields of study for over 61,000 professors to look for systemic signs of nepotistic hiring. With a simple computer model, Allesina detected unusual clustering of last names within disciplines such as law and medicine, far from the random distribution expected with unbiased hiring.

“It’s not a few bad apples, it’s really bad,” Allesina said. “I found that in many disciplines there are much fewer names than you would expect to find at random, indicating a very, very high probability of nepotistic hires.”

The original model worked like a random lottery, repeated one million times. Over the entire dataset, more than 27,000 different last names were represented. For each discipline, Allesina tested whether certain names appeared more than expected at random. So for medicine, where there are 10,783 faculty members with 7,471 different last names, Allesina programmed his computer to test how likely it was to randomly draw only 7,471 names (or fewer) from the total name pool in 10,783 tries.

“It’s very basic, anybody with a laptop can do this analysis,” Allesina said. “I wanted to keep it as coarse-grained and simple as possible. Because then it’s more powerful - if this works, anything else will work. Even this very simplistic analysis can find that some disciplines are above and beyond what one could expect.”

Under this model, the worst offenders were law, medicine, and industrial engineering, all of which showed only a 1-in-1,000 chance of having so few last names by random. On the other end, psychology, demography, and linguistics  each contained a last name distribution close to random, suggesting that hiring was more fair in these fields. Another analysis, which mapped the likelihood of two faculty members in the same field sharing a name by geographic region, found that indicators of nepotism were stronger in the south - a result that would surprise few Italians, Allesina said.

“For an Italian, this is not that surprising,” Allesina said. “It is a narrative of two separate countries, where in the public sector we have more problems in the south.”

A much trickier task than measuring the breadth of nepotism in Italy is finding an effective solution for ending the unfair hiring practices.

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In the recent kerfuffle over the national debt, one of the rhetorical flashpoints was the $800 billion “stimulus package” pushed by the Obama administration in 2009 to fight the economic slowdown. Though the benefits of the American Recovery and Reinvestment Act on unemployment and the economy are fiercely debated, the impact upon the scientific world is just beginning to be felt. Roughly $5 billion of the stimulus money went to the National Institutes of Health for funding biomedical research - and $42 million of that sub-total came to projects involving University of Chicago researchers. Two years later, the fruits of that investment are beginning to ripen, as stimulus-funded projects reach the point of publishing results.

The largest piece of the stimulus pie awarded to UChicago researchers was the $5.6 million designated to form the EVE consortium, an unprecedented national effort to search for the genetic and environmental causes of asthma. Over 34 million Americans are diagnosed with asthma during their lifetime, and the rates are increasing every year. But the origins of this respiratory disease are still mysterious, with the relative contributions of genetics and environmental factors such as air quality and smoking still being unraveled.

One recent tool in decoding the causes of asthma has been genome-wide association studies, or GWAS, where genetic information from a large pool of patients with the disease are compared to a control pool of asthma-free people. But to find a gene or gene variant associated with a complex disease like asthma, a huge number of subjects are needed for statistical reasons. The expenses of successfully recruiting, diagnosing, and genotyping the thousands of people needed to create a sufficiently powerful GWAS were beyond the means of any one research group, frustrating the search for asthma-related genes.

“It has become clear to geneticists studying nearly every common disease that GWAS are often under-powered,” said Carole Ober, Blum-Riese Professor of Human Genetics and obstetrics/gynecology at the University of Chicago. “Unless you pull together many people doing the same thing you’re just not going to have the power to find genes.”

In the world of asthma genetics, nine groups of investigators were encouraged by the National Heart, Blood, and Lung Institute to pool their respective GWAS results to create a shared pool of data large enough to sniff out genes associated with the disease. But that collaboration was easier said than done - until the $5.6 million ARRA grant enabled the hiring of personnel to make the EVE consortium a reality.

“It would never have been possible without the grant, this was a huge amount of work,” said Dan Nicolae, PhD, associate professor of medicine, statistics, and human genetics at University of Chicago, and co-chair of the consortium with Ober. “The key was the ARRA funding that allowed us to move it faster.”

Now, just short of two years since the grants were announced, the EVE consortium has announced their initial results in the journal Nature Genetics. With a new larger data set of over 5,000 asthma cases, the group was able to pinpoint with high accuracy five genetic regions associated with asthma, including one with a very selective profile. Unlike a similar consortium formed in Europe (called GABRIEL), the EVE dataset reflected the ethnic diversity of the American melting pot with subjects of European origin, African origin, and Hispanics. That diversity proved useful, as the EVE data revealed an asthma-associated variant in a gene called PYHIN1 that only appeared in African-Americans and African-Caribbeans - ethnic groups not present in the GABRIEL sample published last year.

“Asthma rates have been on the rise in recent years, with the greatest rise among African Americans,” said Susan B. Shurin, acting director of the National Heart, Lung, and Blood Institute, which co-funded the study. “Understanding these genetic links is an important first step towards our goal of relieving the increased burden of asthma in this population.”

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One of the sectors closely monitoring the debt debate in Washington is the medical world, where hospitals, physicians, and patients anxiously await the final agreement on cuts to Medicare and Medicaid. Of particular concern to academic medical centers [pdf] are proposed cuts to graduate medical education, funding used to pay the salary of residents and fellows who are both training as physicians and specialists and working on the front lines of patient care. In a time when a patient’s wait time to see a specialist grows longer and longer, squeezing the bottleneck of physicians-in-training even tighter could have long-term consequences.

This week, the Medical Center’s executive vice president for medical affairs and dean Kenneth Polonsky took to the newspapers to argue against these damaging cuts. In an op-ed letter published by the Chicago Tribune, he expressed concern that the proposed cuts would “would reduce access to doctors, multiply waiting times and do lasting harm to patients in Illinois and nationwide.”

No one questions the need to rein in spending on health care or the obligation of hospitals to do their part. But we need to maintain a high level of patient care, and to make certain that our country has enough physicians in the future. Policymakers in Washington must maintain their support for graduate medical education and find more equitable ways to distribute the budget-cut burden.

Elsewhere…

Speaking of Washington and health care policy, without the Patient Protection and Affordable Care Act, 63-year-old Glenn Bovard of Valparaiso would not have been able to receive life-saving gift this past Father’s Day: a new heart. The Post-Tribune profiled Bovard’s story and surgery, performed by the Medical Center’s Valluvan Jeevanadam and Jai Raman. “The surgery was a cakewalk compared to the heart attack,” Bovard told the paper.

As many as one-third of patients with epilepsy cannot control their seizures with medication. Local newsmagazine Chicago Tonight profiles efforts by Wim van Drongelen, technical and research director of our pediatric epilepsy center, to develop new ways of helping these patients by modeling how seizures begin and spread in the human brain.

At the end of a long, difficult week, many people like to unwind on a Friday evening with a drink? But does alcohol relieve stress, or prolong it? A new study by Emma Childs of the University of Chicago Behavioral Pharmacology Laboratory and written up by the Gannett News Service suggests a double-edged sword - stress reduces the positive effects of alcohol, while a drink may extend the tense feelings produced by a stressful event.

A cautionary tale about when newspapers twist the words of scientists for sensationalist ends - did paleozoologist Darren Naish really say that the Loch Ness Monster was “more fact than fiction?”

Evolution isn’t only a process that happened in the distant past. Carl Zimmer’s wonderful cover story in the Science Times this week follows New York evolutionary biologists as they hunt for signs of urban evolution in progress for mice, fish, ants, and other city-dwelling critters.

Being a parent these days is anxious business, with an onslaught of news reports telling you what might be good or bad for your child’s health and development. In many cases, these claims are based on scientific evidence that is preliminary at best, studied only in small subject pools or retrospectively. To comprehensively confirm a link between, say, breast-feeding and body weight or living near a smokestack and asthma, a large epidemiological study that tracks thousands of children from before birth to adulthood is necessary. But that kind of study is very expensive, thanks to costs associated with recruitment, data collection, and analysis over decades of time.

As such, it’s better to do one enormous study of many factors that potentially influence child health rather than several independent and costly experiments. Enter the $5 billion National Children’s Study, a federally-funded project that hopes to track over 100,000 American children from their mother’s womb to age 21 in order to test possible influences - genetic and environmental, positive and negative - to their health. Already 11 years in the making, the study is just completing its warm-up phase, hoping to start the main event in April 2012. But as Daniel Johnson and Angela DeBello presented at the University of Chicago Medical Center Pediatric Grand Rounds earlier this month, the study is already teaching researchers valuable lessons.

“We have a very ambitious agenda,” said Johnson, an associate professor of pediatrics at the Medical Center involved in the Chicago branch of the study. “We’re kind of learning how to do this as we’re going along.”

The Children’s Health Study was authorized as part of the Children’s Health Act of 2000, alongside improvements to child mental health care, anti-violence programs, and day care provider training. While many of the other initiatives have long been implemented, the CHS has taken more time to reach the launchpad due to the mind-boggling logistics involved. In order to break down the roughly 4 million U.S. births each year into a manageable study cohort, the project will collect medical and survey data on growing kids from 105 different counties reflecting almost every region of the country.

It’s a beautiful plan on paper, but executing the recruitment and retention of 100,000 children around the country is immensely difficult. Debello, the vice president and associate director of public health research at the National Opinion Research Center (one of the organizations charged with administering the CHS), said that pilot studies have revealed just how difficult it is to even find pregnant mothers eligible for the study. Researchers have tried surveying homes for women expecting children or trying to have children, working with medical providers who can direct eligible women to the study, and mailed surveys to try and find the right subjects. But the up-to-date numbers presented at grand rounds indicated the low hit rate of this full court press: of 28,000 households originally contacted in Cook County, only 67 women were found to be eligible for the study (and only 49 provided consent to participate).

“It’s pretty overwhelming…the numbers are going to get big very quickly as this study progresses,” DeBello said. “Not surprisingly, it was far more expensive than we expected it to be.”

Hence that large price tag, which Johnson admitted is high, while also suggesting that it could be a bargain in the end. Any costs spent on conducting the study should be weighed against the potential health care costs saved with the information it collects. There’s a lot of room to work with in child health costs, he pointed out - a study in the journal Health Affairs calculated that environmentally-mediated diseases caused by lead exposure, air pollution, and other toxins produced $76 billion in medical costs in 2008 alone. Johnson also pointed out that the results of a similarly large project, the Framingham Heart Study, has prevented an estimated 800,000 deaths despite only being 1/20th the size of the CHS.

“It’s still not clear how successful this study will be,” Johnson said. “But we think that the goals and aspirations are certainly strong reasons to drive us forward.”

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