Bench to Bedside and Beyond
The Tufts Clinical and Translational Science Institute builds bridges between research and patients and examines health care from fresh angles
Because nearly a quarter of all kidney dialysis patients die each year, these terminally ill patients and their families face some tough decisions: Should they continue treatment? Draw up a health-care proxy? What about hospice care?
“Once we know who is likely to die, we should be putting our most rigorous efforts into end-of-life care for them,” says Lewis Cohen, a palliative care specialist who helped develop a diagnostic tool that predicts which dialysis patients are most likely to die within six months of beginning treatment. That may sound grim, but Cohen, a professor of psychiatry at Tufts School of Medicine and a clinician-researcher based at the Tufts-affiliated Baystate Medical Center in Springfield, Mass., says it “opens up an opportunity” to help patients and their families negotiate a difficult time.
Cohen and biostatistics expert John L. Griffith, an associate professor at the medical school, developed a series of interventions to help doctors and nurses ease dialysis patients’ anxieties and fears and get them the information they need to make their end-of-life decisions. They encouraged collaborations between hospital staff in the dialysis unit and community hospice workers, who assisted patients and their families in working though end-of-life issues.
When Cohen needed to assess the effectiveness of such interventions, he turned to the Tufts Clinical and Translational Science Institute (CTSI), an NIH-funded enterprise to encourage experts from different fields—such as a psychiatrist and a kidney specialist—to work together to examine health-care issues from fresh perspectives.
One of 60 such centers across the country, the Tufts CTSI provides research teams such as Cohen’s with the education, research expertise and pilot grant awards they may need to turn their good ideas into new practices or policies. That’s both the mission and definition of translational science: quickly getting high-impact, often cost-effective approaches to health care out of the lab and to the patient—often shorthanded as “bench-to-bedside”—as well as supporting interventions such as Cohen’s that improve medical practice.
Cohen and his colleagues received a CTSI Catalyst Pilot Grant in September 2012 to roll out small studies at several dialysis centers in western Massachusetts affiliated with Baystate Medical Center and Berkshire Medical Center.
“Pulling people together from different perspectives
is really important these days.”
Testing their protocol in the real world gave the scientists the chance to iron out unforeseen logistical problems. Now, in collaboration with kidney specialists from the University of Pittsburgh and Stanford Medical Center, Cohen and Griffith will apply in June for a $4.5 million, five-year grant from the National Institute of Diabetes and Digestive and Kidney Disorders to run large-scale trials of the interventions.
Data from the CTSI-sponsored study strengthens the group’s NIH application, Cohen says, improving their chances of obtaining federal funding. “Because of this catalyst grant, we are in an excellent position that I know we would not have been without Tufts CTSI,” he says. “It was absolutely essential.”
With the goal of making headway on such complex medical problems as cancer, diabetes and heart disease, the National Institutes of Health in 2006 announced a plan to create a nationwide consortium of clinical and translational research centers. NIH funding for such centers, including the one at Tufts, encourages not only a wide range of cross-disciplinary research, but also community-engaged research—that is, research done in concert with leaders in industry and government as well as with community programs and religious, ethnic and other interested groups.
Tufts received its grant to create a CTSI in 2008, but the university already had a well-established tradition of translational research, says Harry P. Selker, dean of Tufts CTSI and a professor of medicine.
The Sackler School of Graduate Biomedical Sciences has stressed interdisciplinary research since its founding in 1980. Under its first dean, Louis Lasagna, Sackler became the first graduate school of biomedical sciences to offer a degree in clinical research.
Out of this tradition came projects such as Shape Up Somerville, a collaboration of researchers at the Friedman School of Nutrition Science and Policy and city officials and residents in Somerville, Mass., that has become a national model in the campaign to combat childhood obesity. While Shape Up Somerville predates Tufts CTSI, it’s the perfect example of the type of community-based, cross-disciplinary, collaborative work CTSI wants to foster.
“We don’t just focus on bench to bedside,” says Selker. “We go all the way from bench to bedside, bedside to practice, practice to public policy and public benefit. That’s the focus of Tufts CTSI: finding the best medicine or treatment or strategy for health.”
In addition to 10 Tufts schools and centers, the Tufts CTSI encompasses 10 affiliated hospitals, nine community organizations, three academic partners and three industry partners. That’s a total of 35 institutions, ranging from Maine Medical Center in Portland to the Boston Chinatown Neighborhood Association to the pharmaceutical company Pfizer. “That’s probably the most for any CTSI [in the country],” says Selker. “We are known by some as the extrovert CTSI. That’s in keeping very much with the Tufts personality.”
Laurel K. Leslie, director of CTSI’s Center for Aligning Researchers and Communities, helps scientists build relationships with community members, and vice versa. Collaborating with the community from the very beginning of a project can help focus the research or shape it in unexpected ways. “Pulling people together from different perspectives is really important these days, because NIH reviews [for research funding] are based on significance, innovation and impact, as well as methods,” says Leslie.
When a researcher had trouble recruiting volunteers for a study on parenting interventions in health centers, Leslie’s office helped him engage clinic staff to identify families who would be willing to participate. Likewise, when a community group brought its concerns about asthma in urban day-care centers, Tufts CTSI matched them with researchers in the appropriate fields.
“The critical importance of having the community’s voice involved is so that research is addressing real felt needs,” says Leslie.
A pediatrician at Tufts Medical Center and an associate professor at the medical school, Leslie cites her own experience as an example. In investigating aggressive behavior in children with autism, Leslie came at her study from a classic mental health perspective. That approach assumed that these children—who often suffer significant speech delays—are venting their unspoken frustrations through aggression. But the parents she was working with offered another perspective: Could their kids be acting out because of the severe gastrointestinal issues commonly seen in autism? Leslie was aware of the stomach problems, “but it somehow wasn’t in my framing when I was thinking about how we would approach aggression,” she says. “To make a research project work, I needed to talk to the patients and families to find out what issues they needed addressed.”
For research to really make a mark, the dialogue between scientists and the community needs to continue after a study ends. “One of the problems we have is that researchers do the research, then it [gets published in the professional] journal, and you never see it getting implemented in the real world,” says Leslie.
In a recent collaboration with a multidisciplinary team of researchers, Leslie and her colleagues made their findings available to those who could put them into action. In 2008, a federal law requiring state child welfare agencies to oversee the use of psychotropic medications by children in foster care left many states scrambling to set up systems capable of keeping track of their wards. To find out which states already had oversight guidelines in place, Leslie and her team surveyed all of them, promising them access to the data in return for their participation. That promise resulted in 47 of the 50 states and the District of Columbia participating.
Some results were published in academic and professional journals, but Leslie and her colleagues prioritized creating a user-friendly document that was sent to all the study participants. Available on the CTSI website , the 24-page report is written for nonscientists: legislators, child welfare agency administrators, foster parents and even foster children themselves. In clear, jargon-free language, the report reveals that 26 of the responding states already had guidelines to monitor use of psychotropic drugs, while 13 states were in the process of implementing such programs. The report also identifies the challenges states encountered, as well as their solutions. It includes questions that state child welfare administrators may use to devise their own systems, such as what state characteristics—rural vs. urban, for example—are important to consider.
“It’s a very practical document. States are looking for guidance so they don’t have to reinvent the wheel,” says Leslie, who adds her research team is now consulting on the federal level as well as for the Massachusetts Office of Child Advocates.
Whether they are investigating the cost-effectiveness of tai chi as a treatment for fibromyalgia or designing a study to prevent heart disease in a specific population, Tufts researchers are taking advantage of what Tufts CTSI can offer them. While the collaborative nature of this kind of work may be a shock to the system at some institutions, translational science is “in keeping with the strengths of Tufts University, our extroversion, our interest in policy and impact on health policy,” says Harry Selker. “That’s kind of our special niche.”
Jacqueline Mitchell, a senior health sciences writer in Tufts’ Office of Publications, can be reached at firstname.lastname@example.org.