“We want the public involved as early as possible—even before we design the trials, for instance,” said Maddox. “If a community has been in on the study design, it will be much easier to recruit in that community for the clinical trial.” In addition, she pointed out, study results will be more beneficial,
with better compliance to the study protocol.
“It just saves time in the final analysis. We’d like this approach to be part of every trial.”
During a recent presentation to the NIH director’s
Council of Public Representatives, Grady noted that the initiative was originally formed in 2004 “to enhance public understanding
and increase public confidence
in what NIH does as a research entity across the country and around the world…One of the major themes [of Partners] is really to structure NIH’s interactions with the public, to establish interactions that would have a long-term effect and would be meaningful.”
|“We want the public involved as early as possible—even before we design the trials...If a community has been in on the study design, it will be much easier to recruit in that community for the clinical
Developed over a 2-year period with input from COPR, the program delivers tangibly on NIH’s promise to include everyday people—such as taxpayers who invest time, money and, in a real sense, their health in the agency’s work—at the earliest
stages of medical research. The new program
will fund 40 partnerships in its first year, with grants of up to $50,000 per scientist-organization team. Applications will be evaluated
on significance of the project, approach, quality of investigator(s), research environment
“We hope this R03 grant will be the stepping stone for an R21, an R01 or even a program project later,” Maddox said. At the end of the first year, NIH will host a workshop to evaluate
progress, offer opportunities to network with intramural NIH and share best practices
and skill-building exercises and ultimately make any mid-course corrections necessary.
“We envision bringing in some of the best speakers—some of our most senior investigators—
to talk about such issues as what true partnerships are, how to talk to the media and important skills of listening and negotiating,” Maddox said.
The pilot will also address a concern frequently voiced by individuals and groups who have participated
in medical research before: follow-up. One common complaint is that NIH doesn’t have a formal and consistent way to let research participants know what happened after their part in research is complete. An important principle in developing this program, Grady explained, was finding ways to communicate results after research has been concluded.
Most times it’s not that scientists don’t want to share what they’ve learned, but that study results often take longer than researchers would like to draw conclusions and make findings
public. Maddox agreed that the partners program should “help us maintain some connectivity
to the communities we serve.”
“The significant response NIH has received to this RFA from both academic researchers and the public has been overwhelmingly positive,” Grady said. “This unique RFA provides the opportunity for the public to be involved in research that will be relevant to the health of the nation.”
Concluding that the concept is probably long overdue, she said, “Facilitating partnerships between researchers and communities has been a strong resonant theme from members of both the public trust and the COPR committees.
NIH leadership has been strongly supportive of the idea.”
For more information on the partnership program,
or on NIH’s Public Trust Initiative, visit http://publictrust.nih.gov.