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The Story Behind the Prevention Research Center
Dr. David Guzick, M.D., Ph.D.
September 01, 2004
On March 1, 2004, we applied to the Centers for Disease Control to become a Prevention Research Center. This is a highly coveted award with a myriad of important implications for URMC. In June, we were told that the scientific review was very favorable. Last week, we learned that our Prevention Research Center would indeed be funded by the CDC. Over the next couple of weeks you may be hearing or reading about this in the media. In this week's newsletter, I will try to convey the story "behind the story".
In brief, this cooperative agreement with the CDC will provide the School with $3.5 million (total cost) over the next 5 years to address health risks in the deaf and hard-of-hearing population of Rochester as a unique cultural group. This will be the only center of its kind in the United States that addresses health needs among the deaf. To our knowledge, this will be the only center of its kind in the world!
Thomas Pearson, MD, PhD, MPH
In some of the material below, I will outline the unique features of this population from a health standpoint; more information will follow in other publications. The focus of this newsletter, however, will be on how this Prevention Center evolved from a flickering idea to a reality, and how it represents an important step in a programmed plan for one aspect of our clinical research infrastructure. In addition, I will also introduce you to some of the key faculty who were behind this effort—Thomas Pearson, MD, PhD, MPH (P.I.), Robert Pollard, PhD (Co-P.I.) and Steve Barnett, MD (Co-P.I.).
Over a year ago, Tom Pearson and I had a conversation about how to develop a more robust infrastructure for clinical research. Some of our successful clinical research teams have created—by necessity--their own infrastructure, but we wanted to foster an environment that encouraged and supported clinical research more broadly across the medical center. Some of this is ongoing, such as the creation of the Office of the Senior Associate Dean for Clinical Research, the NIH Clinical Research Center, the K30 award for clinical research training, and the expansion of the Department of Biostatistics and Computational Biology. It is clear that we need to do more, however—more staff and faculty involved in research to create a critical mass, more content areas, and more external funding.
Dr. Pearson was well aware of a series of Special Interest Projects (SIPs) funded by the CDC that cut across a wide variety of content areas, including oral health, vaccine programs, cancer, and others. There were two catches: first, we had to be designated by the CDC as a Prevention Research Center to be eligible to apply for an SIP; and second, to apply for a Prevention Research Center, which is awarded through a competitive, peer-review process, we first had to have a Preventive Medicine residency program. (We didn't.) Tom described the process as shooting an arrow through a series of rings to arrive at the target at the end. I am pleased to report that Tom clearly has his eyes on the target and has cleanly negotiated the first several rings.
Steve Barnett, MD
In November 2003, our application for a Preventive Medicine Residency Program was submitted to the ACGME. A site visit was held on January 22-23, 2004. Meanwhile, we had to write a letter of intent for our Preventive Research Center, and we didn't yet have approval for the residency program. We requested and received an exception, based on our application for the residency; Dr. Pearson and his team then embarked upon the extraordinarily daunting task of writing what was to be the 244-page Research Prevention Center grant for submission on March 1, 2004 without knowing whether it would be acceptable for review, since it could not be reviewed unless the residency was approved. Fortunately, the residency program was approved on March 25, and the grant was allowed to be reviewed by CDC. Our prospects for funding were uncertain, to say the least, since one of the existing centers would have to be dislodged by us in the competitive review. Ultimately, the strength of the proposal prepared by Drs. Pearson, Pollard, Barnett, and many others prevailed.
What are Prevention Research Centers? These are 28 centers housed within Schools of Public Health or Medicine that work with populations having the greatest burden of disease and disability. It is expected that long-term relationships are built to engage communities as partners in research, that a multidisciplinary team of researchers is assembled to seek outcomes that are applicable to the health of the public, and that advanced training in public health and preventive medicine is provided. In this regard, the Prevention Research Center serves our research, education and community health missions.
Most Research Prevention Centers focus on specific populations that are thought to be at high risk yet underserved. Examples would be for rural families in Appalachia, the inner-city poor, etc. No Center had focused on a disability population, however. Although it isn't well appreciated, there is modest evidence that deaf individuals have greater health risks and high use of emergency services, but low use of primary care services.
Approximately 4.8 million Americans cannot hear the spoken word, making it one of our most common disabilities. Rochester is in a unique position to study this population and, hopefully, to intervene successfully in improving their health. The National Technical Institute for the Deaf (NTID) at Rochester Institute of Technology is the world's largest technical college for educating deaf students. Rochester is also home to Rochester School for the Deaf and other organizations serving the deaf. Rochester is thought to have the highest per capital prevalence of deaf people in the U.S., and perhaps the world, and has approximately three times the density of deaf people than other cities in New York State. 10,000 to 15,000 local citizens use American Sign Language.
Robert Pollard, PhD
A major reason that our grant application was successful is the many community groups and institutions that have come together in support of this Center. The grant application was truly a collaborative effort between a large number of partners who will work together in the Center. The Prevention Research Center application required a Community Committee. Fortunately, Dr. Steve Barnett of Family Medicine had previously received a small CDC grant to form a Deaf Health Task Force administered by the Finger Lakes Health Systems Agency. This group then served as our Community Committee and from it was drawn our partnering organizations. The National Technical Institute for the Deaf, the Rochester School for the Deaf, the Monroe County Department of Health, the Health Association, healthcare providers for the deaf, the Deaf Wellness Center in the Department of Psychiatry, the healthcare systems in Rochester, and healthcare payors have all been partners in this successful effort. This was truly a community effort.
Another important strength of the application is that the two Co-Principal Investigators have focused their careers on health care needs of the deaf. Every job Bob Pollard, Ph.D., has had since graduate school has involved working with deaf people. While earning his degree in clinical psychology from SUNY Buffalo, Bob worked for a group home for deaf adults with mental illness. He was one of only two hearing employees working exclusively with deaf people. It was the early 1980s, when Bob discovered a void in resources relating to deaf populations. "I saw that not much research had been done," he says. "You couldn't even take a course on deaf culture. There were no books on it."
So Bob set out to help fill that void. After earning his doctorate, he worked for the Community Center for the Deaf in Columbus, Ohio, and the University of California, San Francisco Center on Deafness, a clinical service and research program. In 1990 he returned to Rochester, his hometown, and established The Deaf Wellness Center at the Medical Center. In addition to providing clinical services to hundreds of deaf patients, the Center is now a world-renowned site for advanced training for deaf individuals in the mental health professions. It has trained more than 20 deaf and hard-of-hearing people from psychology, social work and other professions. Sign language interpreters also come from around the country to undergo training. Its research programs, too, are becoming national models.
Bob, who has written numerous articles and chapters on topics such as the ethics of doing research with deaf people, calls the new Prevention Research Center a huge step. "There are extremely few researchers who look at the deaf population and their health at all," he says.
Steve Barnett, M.D., the prevention center's other Co-P.I., became interested in working with deaf people while a resident at the University of Wisconsin. He took a sign-language course at a deaf club, where he learned much more than how to sign. He walked in and was immersed in a group of people who had no trouble communicating with each other. "I couldn't communicate with anyone," he says. "For them, being deaf wasn't something that needed to be fixed. It was part of who they were."
Steve then helped set up health-education workshops led by fellow residents for the deaf community – an enlightening experience for the doctors, who got to see deaf people actively communicating and interacting with each other. Steve came to Rochester in 1994 for a Family Systems Medicine Fellowship. His goal was to learn about the unique family dynamics of people who use sign language, since the vast majority have hearing parents and give birth to hearing children. In 2002 Steve became an assistant professor in the Department of Family Medicine and, from his contacts, has helped foster the community-based collaboration that will ensure the new Center truly meets the needs of the deaf community.
Now that we have the CDC Prevention Research Center, we are eligible to continue our arrow moving through the next, highly valuable ring—the Special Interest Projects or "SIPS". As noted above, only research prevention centers are eligible to apply for SIPS, and thus the odds of being approved for funding are higher than the normal NIH grant process. There are currently 26 RFAs for SIPS, several of which are in areas where we have significant expertise, such as oral health, vaccine programs, and cancer.
Please join me in congratulating Drs. Pearson, Barnett, and Pollard on a job extremely well done. As this work evolves, the deaf community of Rochester and beyond will benefit tremendously from an improved understanding of health risks and from successful interventions. Moreover, we will have taken one more step toward expanding our critical mass in clinical research and building our clinical research infrastructure.
Meliora,
David S. Guzick, MD, PhD
Dean, School of Medicine and Dentistry
University of Rochester
Dean's Newsletter
Posted May 28, 2009:
A Fond Farewell to the University of Rochester
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