Suleika Jaouad's future was exceptionally bright. She had just graduated from Princeton, moved to Paris and was on her way to northern Africa to launch her dream of becoming a foreign correspondent. Then came three unexpected and terrifying words: “You have cancer.” After five different opinions during her 22-month medical odyssey, the results of a bone marrow biopsy confirmed the dream-crushing diagnosis for the 22-year-old: Acute Myeloid Leukemia and a rare blood disorder called Myelodysplastic Syndrome.
“No one is ever prepared for those three words,” said Jaouad. “But cancer doesn’t care who you are or how old you are. It doesn’t discriminate,” Jaouad told the audience of medical professionals at the 2014 AAMC annual meeting in Chicago. Instead of reporting on foreign revolutions, Jaouad ended up “reporting from the front lines of a different kind of revolution: one that was taking place inside of me.”
“I thought that I would be behind scenes and tell others stories,” said Jaouad “It never occurred that story would be my own.” But as she begin looking around the waiting room in the oncologist’s office and browsing the cancer section at Barnes & Noble, she felt like nothing addressed her as a cancer patient. Nothing spoke to her. There seemed to be no one like her. She was inspired by broadcast journalist Amy Goodman’s definition of a journalist: “The role of reporters is to go to where the silence is and say something.” Jaouad decided that she could shine a spotlight on a group of people too often voiceless—the 70,000 young adults diagnosed with cancer every year.
At 23, she launched her Emmy Award-winning column, “Life, Interrupted” as part of the New York Times Well blog, reporting from the front lines of the bone marrow transplant unit at Memorial Sloan-Kettering Cancer Center. “Cancer is not something that makes you want to share,” said Jaouad. “It did not come naturally.” Inadvertently, she became a patient advocate, which was a cathartic experience for her personally, and also created a community—online and offline—to combat the intense loneliness she felt.
Jaouad finished her last cycle of chemotherapy in April and says she’s “deeply grateful to say that I’m finally cancer free.” Two weeks ago, she had her port removed and appreciated her doctor’s joke: “Congratulations, you’re being deported today.” She realizes now that she has been deported from land of disease to survivorship, which she admits has not been an easy transition. She references Susan Sontag’s metaphor for illness: “Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick.” She adds that there is a no man’s land between those kingdoms where patients like her—who don't have active disease but feel far from well—live. “There is no map to guide you back to the land of the well,” she says. But she has a new mantra: “Health is about adding life to years, and not years to life.”
Panel moderated by Marsha D. Rappley, M.D., Dean, Michigan State University College of Human Medicine.
How can the field of medicine eliminate waste when students aren’t being trained on the best practices to do so? Vineet Arora, M.D., (@FutureDocs) tells us about the Teaching Value Choosing Wisely Challenge: a contest that involves everyone from medical students to department chairs in improving patient care at lower costs.
Academicians are rational, educated and evidence-driven beings who’d like to think they’re beyond bias – or at least, that they can put it aside.
But what if we’re blind to most of our biases? What if we’re not as self aware as we think, that our prejudices rule our thoughts and actions in ways we never imagined?
Such was the uncomfortable realization that on Monday dawned on hundreds of health professionals, medical faculty, hospital staff and administrators at the opening plenary of Association of American Medical Colleges’ annual conference in Chicago.
All of us carry hidden biases—age, gender, race, ethnicity—accumulated from a lifetime of experiences with various social groups. In health care they shape how we see patients. They influence medical school admissions and hiring decisions. And they can slow scientific progress by blinding us to surprise findings.
We know this, intellectually. But Harvard University social ethics professor and author, Mahzarin Banaji brought it home for attendees experientially by having everyone take an Implicit Association Test.
Names and words associated with “career” and “family” flashed onto the ballroom screen and Banaji challenged everyone to sort them as being associated with either men or women. Attendees quickly linked male names and career-oriented words (doctor, faculty) with men, and linked female names and family-oriented words (home, children) with women.
But when the categories were mixed––men/family in one column and women/career in the other––the sorting task was slowed. The audience audibly struggled and groaned. Their shouted responses came at half the rate as before.
Banaji’s own performance, years ago, on that same test was much the same, she admitted. Though she has devoted her career to uncovering hidden biases, she said, she lives in fear every day of succumbing to her own.
“I come from an incredibly male-dominated science…all my heroes were men,” she said. “In my mind, it is very likely that the concept of talent, the concept of genius, the concept of high quality work and good research comes all bundled up in a certain shape or form.”
The prototype is so powerful that when a young woman “walks into to my office, wearing her pink-colored flip flops and saying in a Valley Girl voice, ‘You know professor, I think I like have this interesting idea for an experiment,’” it can be hard to take her seriously, Banaji said.
Our perceptions of people can be prejudiced by something as simple as the register or pitch of their voice, their shape, their eyes or the way they’re dressed.
In her book, “Blindspot,” Banaji and co-author Greenwald, a professor of psychology at the University of Washington, offer tips for overcoming our prejudices.
Like any bad habit, biases are hard to recognize and change.
But Banaji said, writing down one’s values and intentions serves as protection against bias. We can teach students to do that.
We can’t change the anatomy of our brains, but we can make sure our own minds don’t bias our behavior. We can’t eliminate bias, she said, but we can welcome a diversity of biases.
In an environment threatened by less funding, academic medical centers across the nation risk having to shift their research missions from “advancing science” to “preserving science.” Speakers from five university systems shared their approaches to developing junior faculty and creating collaborations through a virtuous cycle
Gabriela Popescu, Ph.D., professor of biochemistry at University at Buffalo, University of New York School of Medicine & Biomedical Sciences, identified herself as the youngest, junior faculty member in the room—typically identified as receiving appointments less than 10 years old.
“Preserving science is preserving scientists and preserving future scientists is preserving junior faculty,” Popescu explained.
As junior faculty gather information, learn to navigate the system, develop their networks and face increasing competition for research funding, junior faculty are lobbying for adjustments to what they consider to be outdated standards of judgment for tenure track criteria. Buffalo has taken a proactive response by starting a junior faculty development program that includes:
- Orientation programs
- Mentoring programs
- Preference development programs
- Networking events
James Economou M.D., Ph.D., vice chancellor for research, University of California, Los Angeles, reminded the audience about the importance of keeping U.S. medical training grounds well- funded. “The United States trains some of the best doctors around the world. We need to build a model that allows us to pay for this social contract.”
Examining innovation as a revenue stream, one in 1000 disclosures and inventions earn more than $1 million, and can take up to 25 years to return on investment. But Economou says we have to continue to innovate and develop because the long-term revenues streams are quite lucrative.
UCLA chased these new models of funding streams down a collaborative rabbit hole by developing and formalizing partnerships with their business school and valuing innovation on campus. By creating an ecosystem for entrepreneurship the program can work on the ground level to develop its junior faculty.
University of Utah’s Carrie Byington, M.D. associate vice president for faculty and academic affairs, developed a model for developing junior faculty that proved to be effective and formalized the system to engage all faculty. Her VPCATS program built a matrix for mentoring “self, senior, scientist, staff and peer” in which all relationships can be leveraged in collaboration this the others. Fundamentally focused on socializing and increasing collaborations across the system the program is showing great returns in engaging faculty growth and education.