||COPR members gather in front of Bldg. 1.
“We at NIH firmly believe that engaging the public [in research] is not merely an option, but a necessity,” said Dr. Patricia Grady, director of the National Institute of Nursing Research, at the Partners in Research (PIR) investigator workshop held Oct. 26.
The birth of “Engaging the Public in Research (EPR) Week,” coincided with the 10th anniversary
of COPR, a federal advisory committee
consisting of 21 members from across the country who make recommendations to the NIH director in the interest of the public and who inform the public about NIH programs and projects. EPR week was co-sponsored by the NIH Office of the Director’s Public Trust Initiative
(PTI) and COPR.
The PIR workshop kicked off EPR week. In opening remarks, Grady referred to the establishment
of PTI and the subsequent development
of the Partners in Research as “ground-breaking initiatives.”
Dr. Yvonne Maddox, deputy director
of the National Institute of Child Health and Human Development (and co-leader of PTI, with Grady), provided an overview of the PIR program.
She noted that by the end of September 2008, 74 community-based research grants with broad geographical and NIH institute representation
were awarded. She also described the purpose of the workshop—
to allow participants to share their experiences with NIH as well as other workshop participants and provide an opportunity
for them to network. In a lighter moment, she compared the excitement of community-based research to having a baby, “something our institute knows a little something about.”
l: Speakers at the STEP forum included (from l) Dr. Sarah Gehlert, Dr. Syed Ahmed, Ann-Gel Palermo, Dr. Francesco Celi, Dr. Lisa Rey Thomas and Dr. Claudia Baquet.
Above, r: Dr. Howard Koh, HHS assistant secretary for health, told NIH grantees and other attendees at the Partners in Research workshop that “working with communities in partnerships is where we must go in this country.”
Following introductory activities on Oct. 26, which included a tour of NIH and a grant-writing
mini-workshop, the afternoon session began with the PIR investigators’ workshop. Dr. Raynard Kington, NIH principal deputy director,
welcomed PIR grantees and introduced guest speaker Dr. Howard Koh, HHS assistant secretary for health.
Koh echoed the sentiments of earlier speakers
by saying that working with communities in partnerships is “where we must go in this country.”
Prior to his HHS appointment, Koh spent 6 years at Harvard University engaged in community-
based research. He noted that his career has exposed him to much suffering and death that could have been prevented. “The answer must lie in a community-based health solution,” he insisted.
|Dr. Julianne M. O’Daniel (r) of Duke University discusses her poster “Genome Diner: A Strategy
for Community-Research Engagement in Genome Sciences,” with Dr. Yvonne Maddox,
NICHD deputy director.
Involving the people for whom biomedical and behavioral research efforts are designed was the overriding theme of EPR week. Moving
the focus of the event from grantees to NIH intramural and extramural program staff, COPR co-hosted the Staff Training in Extramural
Programs (STEP) forum, “Nuts-and-Bolts of Community Engagement in Research.” Kington opened the forum with a charge to the audience
to be inspired to “come up with novel ways NIH can expand this effort.” The forum, which highlighted COPR’s recent recommendations on community-engaged research, featured best-practice models in a variety of communities and generated dialogue for future consideration.
An intriguing model was presented by Dr. Francesco
Celi of the Clinical Endocrinology Branch, NIDDK, who spoke at the STEP event. He illustrated
the logistics, challenges and research objectives his group (which includes both intramural
and extramural scientists) faces in an ongoing study utilizing dietary intervention for members of an Amish community in Lancaster County, Pa., who are carriers of a genetic mutation that, when present in two copies, increases the risk of premature cardiac death. Ultimately, he said, the hope is that results may yield novel
therapies not only for those afflicted by the rare disease (sitosterolemia), but also for people with other metabolic disorders.
|NINR director Dr. Patricia Grady addresses the Partners in Research investigator workshop.
On Oct. 30, the COPR meeting was held, the first since the appointment of Dr. Francis Collins
as NIH director. Collins emphasized the importance of integrating research into the community. He said that recent technologies and new tools can give us new ideas that will enable us to understand fundamental biology and uncover the cause of specific diseases. This is currently taking place in the area of hereditary
diseases, he added.
Collins also briefly reviewed the “wonderful
opportunities” offered by the $10.4 billion granted to NIH via ARRA, with three basic goals of stimulating the economy, creating ideas and advancing biomedical research.
In offering thanks to three retiring members of COPR, Collins also paid tribute to the late Dr. Ruth Kirschstein for more than 50 years of loyal
service to NIH. “We recently lost one of our dearest, most dedicated scientists,” he said.
COPR also heard discussions from several institute
directors on public interest topics including
comparative effectiveness research, complementary
and alternative medicine and international biomedical research initiatives.