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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As another year comes to a close we’d like to look back at the fascinating research breakthroughs and inspiring patient stories from 2011. ScienceLife ran 168 posts this year, and while we wish we could highlight all of them, here are a handful of our favorites from each month.

January

Patrick Wilson found out that the H1N1 virus could end up helping us fight all types of flu. Stephen Pruett-Jones studied how some male birds mimic the sounds of predators to pick up the ladies (with an audio clip). We interviewed David Gozal about his study on the link between childhood obesity and lack of sleep, and took a look at NCAA regulations mandating sickle cell testing for athletes.

February

Harold Pollack gave a lecture on why violent crime in urban, minority communities should be considered a public health epidemic. Siri Atma Greeley studied the actual medical benefit of widespread genetic testing. Stacy Lindau wanted to know why so few women get help for sexual problems after surviving cancer. We talked to Bana Jabri about the causes of celiac disease, and Sliman Bensmaïa showed us how the brain processes the basic elements of touch very much like it handles visual information.

March

Sola Olopade educated women in Nigeria about using clean-burning stoves to prevent indoor pollution. Stefano Allesina and Jonathan Levine looked at how rock-paper-scissors helps explain evolution. Joshua Miller went to Yellowstone Park to see what stories the ghostly bones of animals can tell, and Scott Eggener questioned the wisdom of indiscriminate prostate cancer screening.

Photo by Gerald Waddell

Andrea King studied the wide range of responses to drinking alcohol, and why it can be fun for some people and a bummer for others. Cheryl Reed took a ride in a helicopter with our UCAN nurses. Kamal Sharma looked at the genes that control animals’ gait, and Ningqi Hou studied how urban environments can dictate how much exercise people get.

May

Daniel McGehee looked at the long-term effects of nicotine on the brain. Habibul Ahsan went to Bangladesh to study the health impacts of accidental exposure to arsenic in drinking water. The brain’s overlooked supporting cells got their due at a conference on neuroscience, and we remembered a landmark discovery about a once popular drug taken during pregnancy that we now know can cause cancer.

June

As we headed into summer, Diana Lauderdale used Google to track MRSA. We learned about an extraordinary transplant where a man received a new heart, liver AND kidney. Daniel Geynisman gave us the rundown on whether or not cell phones are killing us (they’re not, as long as you don’t use them in the car), and some UChicago undergrads studied what happens to gorillas on the birth control pill.

July

We spoke to Donald Jensen and Andrew Aronsohn about the new outlook for patients with hepatitis C. Igor Schneider made a time machine to find the genetic switch for limb development. Farr Curlin led a study about the benefits of addressing spiritual needs alongside medical care, and Adam Cifu looked at the phenomenon of scientific study reversals.

August

Stefano Allesina dug into the long, shady history of nepotism in academia in Italy. John Schneider talked about his work addressing sexual health and stigma in India. Michael Becker discovered a new treatment for the Royal Disease, and we had the rare chance to name check a Spiderman villain in a post.

September

Martha McClintock and Suzanne Conzen studied the connection between social isolation, stress and breast cancer. Gallego Romero traveled to India to search for the origins of lactose intolerance. Stephanie Dulawa developed a mouse model for OCD, and Paul Vezina looked at a different kind of obsession, compulsive gambling.

October

Arshiya Baig started a pilot project to help people learn about life with diabetes through pictures. Manyuan Long found that some of the youngest genes are in the brain. Jens Ludwig and Stacy Lindau published a landmark study about the connection between neighborhood poverty and health, and Issam Awad studied a rare brain disease that soon could be treated with a drug instead of surgery.

November

Cathy Pfister and Tim Wootton figured out how to use seashells to track climate change over the years. Lianne Kurina found a link between loneliness and sleep quality. Shantanu Nundy, Monica Peek and Marshall Chin developed a program to send text message reminders to people with diabetes, and Pan Chen looked at the links between childhood abuse and aggressive behavior in adults.

December

Inbal Ben-Ami Bartal, Jean Decety and Peggy Mason discovered that rats can show empathy for their fellow rats in distress. Maciej Lesniak performed a scary but amazing brain surgery on a patient who was awake. Cathryn Nagler searched for the source of food allergies within our bodies, while Stafano Guandalini uncovered the challenges in educating doctors about one of those allergies, celiac disease.

Whew. Hope you were able to click through at least a few of those. We look forward to another great year of research in 2012. We’re taking a break next week, but we’ll be back on January 5. Happy holidays!

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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Medical students spend the first half of their education learning anatomy and physiology, and the second half applying that knowledge in the hospital. But where in that process do they learn the very important skill of listening and talking to their patients? In the panel discussion that followed yesterday’s announcement of The Bucksbaum Institute for Clinical Excellence, it was clear that even physicians who graduated from medical school decades ago remember exactly when and from whom they learned those important lessons. In some cases, that mentor was sitting just a few feet away, such as when Mark Siegler spoke of his time as a medical student learning from the now 102-year-old Joseph Kirsner.

“The way you learn medicine is by seeing, not by talking. You have to show what good care is about. I learned from studying people like Joe,” Siegler said. “Joe told us that everything was important, [including] science and clinical inquiry, but patients came first, patients were the absolute first priority.”

The Bucksbaum Institute, made possible by a $42 million pledge from The Matthew and Carolyn Bucksbaum Family Foundation, has borrowed that sentiment as its defining principle. Teaching bedside manner may not be as straightforward as teaching biology, but creating a system of mentorship can help experienced physicians pass lessons down to young and aspiring doctors. Perhaps with serendipity, the panel represented that kind of mentorship family tree, with Dr. Siegler seated next to his former trainee Holly Humprey, dean for medical education, and Dr. Humphrey adjacent to current Pritzker 4th-year medical student Rebecca Levine.

[Watch video of yesterday's announcement and panel discussion.]

Each panelist and speaker at the event talked about the doctor-patient relationship as a phenomenon under threat in the modern health care system. Though better tests, treatments, and procedures have saved and extended countless lives, an increased reliance upon technology can interfere with the “old-fashioned” methods of taking a good patient history and answering patients’ questions.

“We were always taught that 90 percent of the diagnosis in medicine was based on what the patient tells you,” said Kenneth Polonsky, dean of the Division of the Biological Sciences and the Pritzker School of Medicine. “There are tendencies on the part of physicians to rely more on technologies than on what the patients tell them, their interactions with patients, and what they learn at the bedside.”

It makes sense then to start with doctors-in-training, and the foundation of the Bucksbaum Institute is the financial support of three to five new medical students a year as Bucksbaum Student Scholars [read more on the Insitute's organization in the FAQ]. Because of the Pritzker School of Medicine’s reputation as a “teacher of teachers,” (30 percent of Pritzker graduates go on to faculty positions at academic medical centers, Humphrey said), the hope is that the emphasis on doctor-patient communication seeded at the University of Chicago will spread around the country.

“This gift allows our medical school to make a very public statement to our students at the time they are applying to medical school and then during their experience in medical school, that the doctor-patient relationship is fundamentally important in the education of a physician,” Humphrey said. “Then, upon graduation, our students populate schools across the country and carry on that Bucksbaum tradition wherever they go.”

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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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In a typical clinical trial, the results are reported in purely medical or biological terms. Did the patients in the treatment group live longer than those in the control group? Did the drug shrink the tumor or reduce symptoms? Were clinical measures such as blood pressure or cell counts affected? These are the details that the Food & Drug Association and the physician community look for when they decide to approve or prescribe new therapies. But looking at a new treatment’s effects in a medical vacuum might miss critical details about its actual usefulness out in the real world, where patients have different priorities and health care dollars are finite.

To create a more well-rounded and practical clinical trial, medical researchers need to reach outside of their discipline for expertise. Or, they can bring those experts into the hospital fold, as was recently done with the establishment of the University of Chicago Program in the Economics of Cancer. Led by Ya-Chen Tina Shih, an economist who specializes in the economic aspects of cancer care, the program has a unique premise: to study the economics of a disease that produces estimated yearly costs of $270 billion and rising in the United States. In a field where new treatments, devices, and procedures appear with startling frequency, Shih’s group aims to weigh the costs and benefits of these new technologies so that patients receive the best, most logical care rather than just the hot, new, often-pricey thing on the market.

“I see it as a place to bring researchers together to look at economic issues in cancer,” Shih said. “The issues to be addressed can be large policy issues or a cost-effectiveness analysis comparing two different treatments. What we would like to do is provide an environment where if there are oncologists who want to study those questions, they don’t have to try to learn everything themselves. They can team up with economists or people in operation research or health services research, and can work on issues together. Similarly, people with no medical training who are interested in exploring those questions can find their clinical collaborators here.”

Calculating the cost of cancer is harder than it might seem. A diligent researcher could, with much effort, simply total up all the money spent on drugs, procedures, doctor’s appointments, and devices, and calculate a price tag for cancer or cancer treatment. But one must also take into account the indirect cost of missing work, either temporarily due to illness, side effects, or surgery, or permanently due to death. Other factors are even harder to convert into dollars, such as quality of life under different treatments, while still others are politically fraught, such as cost-effective analysis to determine whether a new treatment is a significant enough improvement over the current standard of care to justify coverage by insurance companies.

Economists can estimate these figures retrospectively, after a given treatment has been out on the market for a few years or more, but at that point the horse is long out of the barn. If a new treatment is given to patients for three years, then found to be less cost-effective than the standard of care it replaced, it could unnecessarily cost society millions or billions of dollars. Shih hopes that the Program in the Economics of Cancer will help cancer researchers design clinical trials with such economic questions in mind, so that information about costs can be gathered before the widespread diffusion of a new technology that provides a very small benefit at substantial cost.

“You don’t at the conclusion of a trial say ‘let’s add a cost-effectiveness analysis to that.’ By then, it’s way too late,” Shih said. “The idea is to get more people interested in collecting this data at early timepoints, so by the time they really want to answer a question, they have the data to answer it.”

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Cancer used to be a black box, a disease that physicians could only monitor through surgical biopsies and indirect measures. But for the last thirty years, the use of computed tomography imaging, better known as CT scans, has allowed oncologists and cancer researchers to keep close watch on the growth or shrinkage of a tumor for many different types of cancer. A patient with a lung tumor, for example, can be scanned every few months in order to see whether their therapy is working - and if it’s not, doctors may choose to switch treatments. Clinical trials of new therapies for cancer also make use of CT scans, using the increase or decreased size of the tumor as a primary data point.

But for all the benefits of scans over surgeries to monitor tumor size, flaws remain for CT scans. A new study published this week in the Journal of Clinical Oncology shines a harsh light on one of the primary problems - the technology’s variability. Patients usually are given CT scans months apart, and trained radiologists measure the tumors to see whether they are growing or receding. But how much of those changes can be attributed to random error from the imperfect resolution of the scan or the breathing of the patient?

To test this baseline error, researchers from Memorial Sloan-Kettering Cancer Center got a little tricky. Instead of taking two scans from a patient months apart, they took two scans in quick succession, within 15 minutes. The scans were then handed off to experienced radiologists, who were told to measure the change in tumor size without knowing how much time had elapsed between the images. The results were sobering - despite the tumor being biologically identical between the two near-simultaneous scans, the radiologists found changes in size of 1mm or more in more than half of the samples and a 10 percent error range in either direction overall. Although the criteria for tumor progression is an increase in size of 20 percent or more, that 10 percent error could considerably distort the data when clinical and research decisions are made using normally-spaced scans.

The result doesn’t render CT scans obsolete, but offers new caution about the method’s shortcomings.

“It’s the sense of, ‘Really? Is this first happening now?’” Michael Maitland, assistant professor of medicine at the Medical Center, commented to Reuters Health about the study findings. “This is telling us scientifically how much noise is naturally there without any treatment or the cancer getting worse. It’s an important thing to do whenever you are going to use any kind of marker for a disease.”

In an accompanying editorial in the Journal of Clinical Oncology, Maitland went further, writing with his co-authors that it was time for oncologists to rely less upon CT scans alone and move toward integrating those images with other measures to create more precise monitoring technologies. As cancer edges toward more personalized treatment strategies, developing better diagnostic tools will become even more important, they argued.

“It is time to cast away familiar conventions and turn to better methods of evaluating malignant disease therapeutics,” they wrote. “It is time to replace these systems with more innovative, quantitative approaches that have the potential to define relationships between solid tumors, disease progression, and therapeutic outcomes in patients.”

Elsewhere…

It might have come out a few days late for the 4th of July, but Travis Carter’s study of the effects of seeing the American flag on political beliefs is still timely. If the Booth Business School researcher is right, we’ll all be slightly more Republican for at least the next 8 months. Ed Yong at Not Exactly Rocket Science did a great writeup that was featured on the Colbert Report this week (and also wrote up our own Neil Shubin’s study on the origin of limb genetic programs this week as well).

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By John Easton

At 1:30 pm, on Monday, December 12, at its Annual Meeting and Exposition in San Diego, The American Society of Hematology will recognize Janet Rowley of the University of Chicago Medical Center, and Brian Druker of Oregon Health & Science University, with the 2011 Ernest Beutler Lecture and Prize for their significant advances in the diagnosis and treatment of chronic myeloid leukemia (CML), a cancer of the blood characterized by an overproduction of white blood cells.

This is a great honor - and a storage problem.

Rowley has received many prizes over the course of her career: the Lasker Award, the Gruber Genetics Prize and the American Association for Cancer Research Award for Lifetime Achievement. President Jimmy Carter appointed her to the National Cancer Advisory Board. President Bill Clinton awarded her the National Medal of Science. George W. Bush selected her for his President’s Council on Bioethics. She stood with President Barack Obama when he signed the stem cell research bill and she returned to the Obama White to accept the Presidential Medal of Freedom. Then she moved to a new office with a better view, but less shelf space.

Rowley has long been known for brilliant insights, intellectual rigor, and relentless tenacity, but never for extreme neatness. “Her filing system involved piles,” said MaryBeth Neilly, a senior research technician who works with her. When preparing for the move, “we found awards all over the place,” she said. “We knew we needed a place to put them, and that her office was not that place.”

Thus was born the shrine. “Once we moved, but before we unpacked, we ordered a display case,” said Neilly. She and Rowley sorted through the honors and picked the cream of the crop; those that were the most significant, or that looked really cool. Lots of them, some of the trophies, most of the plaques and the vast majority of honorary doctorates, were transported - lovingly, but in bulk - to the University archives.

The display case soon filled to capacity. “There’s a lot of crystal in there, a lot of shiny metal,” Neilly said, such as the National Cancer Institute’s Rosalind E. Franklin Award for Women in Cancer Research, a big carved glass bowl, or the National Medal of Science, a golden medallion.

A few favorites - for reasons aesthetic or sentimental - wound up in Rowley’s office, including the Lasker, the Presidential Medal of Freedom, a large, twisting crystal chromosome from the Jeffrey M. Trent Lectureship in Cancer Research, and a bronze sculpture from the Leukemia and Lymphoma Society. A few more are at Rowley’s house. Two made of a particularly valuable soft, shiny heavy metal, stay at a local bank. The exact positioning of the Beutler Prize has not yet been determined.

Elsewhere…

Vijay S. Dayal, a longtime fixture of the Medical Center’s otolaryngology department, passed away last week at the age of 74. A head-and-neck surgeon and expert on hearing and balance, Dayal was also known as a skilled inventor, obtaining patents for an artificial voice box and a customized “rotating chair” used to test dizziness and balance. “Testing in the chair is not uncomfortable for the patient,” Dayal said in 1991. “It’s like a mild ride on a merry-go-round and it provides us with information we cannot get any other way.” You can read another obituary for Dr. Dayal at the Chicago Tribune.

What’s it like to be a medical student? Pritzker first-year Akash Parekh narrates a day in his life for US News & World Report. Spoiler alert: there’s not much free time, or sleep.

If parents refuse vaccinations for their child, should pediatricians be allowed to refuse to take them as a patient? That interesting ethical question was the subject of an article by the Chicago Tribune’s Deborah Shelton.

The new Scientific American blog network officially launched this week, and provides a new home to many of my favorite science bloggers. For a taste, check out Lucas Brouwers’ post on the evolution of E. coli, and this interview with John Boswell of Symphony of Science (best known for the Carl Sagan autotune track “A Glorious Dawn”).

By John Easton

In most clinical trials the targets are patients, volunteers with a disease who sign up for a study to help advance medical knowledge and perhaps lead to better treatments for what ails them. But this week a report in the Archives of Internal Medicine revealed that sometimes the real targets are not so much the patients as the physicians who treat them.

The doctors who agree to participate as investigators in such a trial almost never find out that that they are the trial’s subjects, the ones being studied. Studies of this sort are known as “seeding” trials–kind of like seeding a cloud with particles in order to produce precipitation. The goals of a seeding trial extend beyond measuring the safety or efficacy of a drug to persuading - some would say hoodwinking - the hundreds of doctors who take part in the study to prescribe the drug and become rainmakers for a drug company. So much for informed consent.

Such matters “seldom see the light of day,” explained Caleb Alexander, associate professor of medicine at the Medical Center, who wrote a commentary to accompany the Archives paper, which was authored by researchers at Brown and Yale Universities. “One might think that seeding trials should be illegal,” he said. “They are unethical. They are not illegal.”

No one knows how often this happens. There is only one other recent, well-documented case and it required a lawsuit to come to light.

In this case, the lawsuit was triggered by accusations that the drug gabapentin - AKA Neurontin, approved by the FDA in 1994 for use to control seizures and in 2002 for nerve-related pain - was being marketed for off-label uses, such as for psychiatric disorders. The suit opened the vaults, allowing plaintiff’s lawyers broad access to the drug makers’ marketing plans, eventually resulting in hundreds of millions of dollars in fines.

One small part of the drug’s history was the STEPS trial, short for Study of Neurontin: Titrate to Effect, Profile of Safety. This was an uncontrolled, unblinded trial, launched after FDA approval. It enlisted 772 investigators, many with little or no clinical-trial experience, and 2,759 patients. Even before it began, there were questions about the design. After it was completed, there was the lawsuit, and then there were documents - more than 3,000 of them - correspondence, memos, presentations, market research. The researchers focused on about 400.

What they found met all the requirements for a seeding trial, as spelled out in a 1994 article in the New England Journal of Medicine (PDF) by former FDA commissioner David Kessler and colleagues. “Some company-sponsored trials of approved drugs appear to serve little or no scientific purpose,” they wrote. They are, instead, “thinly veiled attempts to entice doctors to prescribe a new drug being marketed by the company.”

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By Meghan Sullivan

That there even was a luncheon at Crerar library last week to welcome Nancy Hopkins was a sign of progress. Speaking of a committee formed at MIT in 1995 to explore gender discrimination among tenured faculty, she commented that their meetings were generally held off campus since “having that many women in one room at MIT was so unusual that we were afraid to be seen meeting on campus…it was sure to arouse suspicion.”

Fifteen years later, the packed luncheon in the middle of Crerar was hard to miss. A few dozen women - and a few men - had gathered to discuss her work uncovering and fighting gender discrimination at MIT. More than a relaxed opportunity to ask Hopkins questions before her afternoon lecture, the lunch was a chance for graduate students and post-docs to discuss their experiences and ask for advice. While the prevalence of gender discrimination in the sciences and elsewhere tends to incite strong emotion, Hopkins carried herself with sensibility and humor that was contagious.

Hopkins, a professor of biology at MIT and accomplished cancer biologist, is the first to admit that she never intended to be a feminist. It wasn’t until pervasive and arguably unconscious barriers at MIT began to impede her research in 1995 that she took action against the status quo. Science, she pointed out, has always been touted as a meritocracy, yet she saw her female colleagues repeatedly passed over for tenure, funding, even lab space. In the early stages of her work on gender discrimination, Hopkins perused the MIT staff listings looking for other women in science. She was shocked to learn that out of 274 faculty positions, only 22 were filled by women. “I said check the back of the catalog,” she laughed, “Perhaps they list them separately.”

But why was science losing women? By the nineties the percentages of male and female graduate students in the sciences were about equal, yet that equality failed to emerge in tenured faculty positions. To explain this, Hopkins described a well-established phenomenon known as “the Leaky Pipeline.” In essence, while the proportions of male and female students entering science are comparable, women are more likely to leave (or leak out of) the scientific career path due to issues which primarily affect women.

Like many, Hopkins believed the Civil Rights Act and affirmative action policies were the answer to getting more women in science. But over the next thirty years, less obvious issues proved serious barriers, including sexual harassment, connecting with an empowering mentor, and managing a successful family-work balance. The last was especially frustrating, as high level science can often require more than 70 hours of work a week, leaving little time for family and children. As Hopkins put it, many were required to be “nuns of science,” working in an environment where talking about family and children was far from the norm.

However, it wasn’t until one of the more insidious barriers to women in science began to interfere with Hopkins work that she got involved. Called unconscious gender bias, this subconscious undervaluation of work done by women has been studied for years by psychologists. For example, when people are shown work done by a man or a woman and asked to rate it, the panel will value the man’s work over the woman’s, even if the objective quality of both is identical. Such undervaluation of women’s work not only directly impedes their progress up the academic hierarchy, but also self-selects female researchers out of science, caving to feelings of inadequacy and disappointment. As Hopkins said, she felt that “no matter what I discovered, I wouldn’t be accepted in this field.”

Rather than give up a career she’d already sacrificed so much for, Hopkins and 16 other tenured female faculty members drafted a letter to MIT’s Dean of Science at the time, Robert Birgeneau, concerning the unfair gender biases prevalent in the MIT system. Birgeneau responded immediately and impressively to the committee’s report, instituting an aggressive hiring campaign designed to recruit top female researchers from around the world. The resulting increase in the percentage of women faculty was fondly called “the Birgeneau bump.” In addition to the hiring of more women, MIT set to work on increasing day care options and set up committees that would oversee equality in working conditions and institutional policy. These institutional changes would go on to become a standard in the academic world and be adopted by institutions throughout the country.

Yet problems remain.

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The final question of the MacLean Center for Clinical Medical Ethics seminar series on health disparities was a seemingly obvious query that had gone unasked and unanswered the entire year: who is responsible for fixing the problem? For the self-selecting audience that had attended the lectures all year, the question may have seemed irrelevant - many in attendance are already working on research and interventions to reduce disparities at home and abroad. But for Dan Brock, the director of medical ethics at Harvard Medical School, the question was worth approaching from a philosophical perspective, if only for the purpose of preaching beyond the choir assembled each week at the seminar series.

The statistics about disparities between developed and undeveloped countries are not in question: the threefold difference in life expectancy, the millions of children who die each year from preventable disease and malnutrition, the large discrepancies in health care spending. But who has the moral responsibility to try and remedy these enormous global health gaps? Is it the obligation of rich individuals, or organizations and institutions, or governments, or (as a libertarian might say) of nobody at all? Brock said that philosophical theories of global justice are too new to offer answers for such questions. Arguments have been made for centuries about helping the unfortunate you can see, or even the unfortunate of your own tribe, city, state, or country. But stretched to a global scale, these theories have not yet matured, on issues such as how to take care of a nation’s own needy while still assisting the “foreign” needy thousands of miles away.

To address this shortcoming, Brock suggested three other scaffolds upon which an argument for fighting global disparities could be argued. The first was an economic proposition: as he stated, “if you can prevent great harms at little risk, you are obligated to do so.” Fifteen cents worth of rehydration salts can save a child from dying of dehydrating diarrhea, ten dollars (the cost of a movie) given to a charity can buy minimum essential medicines and more - an argument for sacrifice.

“One can’t make a plausible case that more good comes from me going to a movie then would be done in the world if I had gave that money to OxFam instead,” Brock said.

One obstacle to these small acts of charity is the “out of sight, out of mind” phenomenon - as Brock said, almost everyone would give part of their sandwich to a starving African child sitting next to them, but the concept of millions of starving African children is more abstract. But in a time of increased connectivity, where news organizations and social media can instantaneously spread images around the world from even the most remote locales, this detachment will no longer be an excuse, he said.

Brock’ s second argument that the well-off are obligated to help the needy was a harder pill to swallow: Guilt. The prosperity of the developed world is not independent from the poverty of the undeveloped, Brock argued; it was built upon a history of slavery and colonialism that has continued to handicap Africa and Asia long after such policies (officially) ceased. Even today, the exportation of natural resources such as oil from Africa and the Middle East to the developed world perpetuates oppressive governments, inequalities, and poverty in those countries. That complicity in the suffering of others gives the developed world a special responsibility to help, Brock said.

“Our failure to act isn’t just a failure of beneficence, a failure to help others that are needy, because we are in significant respects causally responsible for their need and in turn morally responsible for their suffering,” Brock said. “If I was the one who drove into your car and wrecked it, then I have a special obligation to help you, because I caused your need.”

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Reducing health disparities in the United States has been a top priority for our health care system in these early years of the 21st century. But efforts to narrow the health gap between black and white patients go much farther back, to the start of the previous century when the first African-Americans were graduating from medical schools and Ph.D. programs around the United States. Those early black professionals looked at the state of African-American health at the turn of the 20th century and were appalled, said Vanessa Northington Gamble, professor of medical humanities and history at George Washington University, at her MacLean Center for Clinical Medical Ethics seminar in late April. No less a figure than Booker T. Washington spoke out about the direct link between African-American health and civil rights in the early 1900’s, saying:

“Without health … it will be impossible for us to have permanent success in business, in property getting, [and] in acquiring education …. Without health and long life all else fails.”

The solutions those black intellectuals chose to improve the health of their race, in a time of national segregation, were very different from the options under consideration today. But Gamble said that discussion of those efforts is missing from the conversation about health disparities interventions in today’s society.

“We don’t talk about the history of these disparities - what are some of the programs that came in the past to address these disparities,” Gamble said. “I do think that many people think it’s only been in the past 20 to 25 years… but I want to talk about what the black community did to take care of itself.”

At the time, black patients faced segregated hospitals and racist theories, such as those put forth by statistician Frederick L. Hoffman in his book, “Race Traits and Tendencies of the American Negro.” Hoffman, an actuary for Prudential insurance, argued that the company should not cover African-Americans because they were destined to die out due to unchangeable biological factors of their race. To refute those claims, W.E.B. Du Bois published his 1906 study, “The Health and Physique of the Negro American,” which pinpointed socioeconomic factors, rather than biology, as the cause of poor health in the black community.

“Du Bois agreed that the health status of African-Americans was worse than that of white Americans,” Gamble said. “Where there was disagreement was on what were the causes of what we would now call health disparities or inequities…for example, he said the high infant mortality rate in Philadelphia was not a ‘Negro affair,’ but an index of social conditions.”

In the wake of that research, black professionals united to try to beat back higher rates of infant mortality, pneumonia, and tuberculosis - the latter of which Du Bois called “the greatest enemy of black people.” One of the best strategies, in the face of segregated hospitals and discrimination from white physicians, was to establish black hospitals to improve access to health care. One example on the South Side of Chicago was Provident Hospital, founded in 1891 by Emma Reynolds and Daniel Hale Williams, who would go on to perform the first successful open-heart surgery there. Similarly, black doctors formed the National Medical Association in 1895, because of their difficulties in joining the American Medical Association. Playing along with segregation wasn’t unanimously popular in the black population of the time; in fact, Gamble said one minister prayed Provident would burn to the ground because it catered to racism.

“You have to look at [black hospitals] in the context of segregation,” Gamble said. “Many black physicians said we wish we didn’t have to start black hospitals, but if we wait for integration, the health of the race would suffer.”

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