News You Can Use: Office of Patient Recruitment

Extending the Reach of NIH Studies

BY BRANDON LEVY, OIR

If researchers design a groundbreaking clinical study, and no patients know about it, what’s the use?

The scientists may have a supply closet bursting with test tubes and Petri dishes, a set of blank consent forms stacked two feet high, and the latest cutting-edge analytic software loaded onto their desktops. But without any participants, all those test tubes, consent forms, and spreadsheets will remain empty. We are nothing without our patient volunteers.

Fortunately, the NIH Clinical Center’s (CC’s) Office of Patient Recruitment is eager to help find participants for intramural studies. In fiscal year 2017, it assisted with recruitment for 229 clinical trials performed at 19 of NIH’s institutes and centers. In addition to a staff of knowledgeable recruitment specialists who work with scientists at all stages of the research process, the Office of Patient Recruitment oversees the Clinical Research Volunteer Program, a database of more than 20,000 healthy volunteers interested in participating in NIH research. The registry can be filtered based on demographic criteria such as age and sex, as well as by more specific characteristics such as whether an individual is taking certain medications. The combination of these two resources can greatly reduce the difficulty of finding participants for intramural studies.

Recently, the Office of Patient Recruitment joined forces with the CC’s Office of Communications and Media Relations. The technical and creative expertise of the two offices combined means that patient-recruitment services are significantly enhanced.

“We have the brightest and best minds in science here at the NIH, and they’re spending their time trying to recruit, which is not really their specialty,” said Molly Freimuth, the media lead in the Clinical Center’s Office of Communications and Media Relations. “They’re trying to wear a different hat that they don’t have to, and we can take so much off of their plates.”

Using their media savvy and understanding of how biomedical research is done, the office’s recruitment specialists work with researchers to create recruitment approaches tailored to studies’ specific target populations. The specialists design flyers, postcards, and other printed recruiting materials; create newspaper and radio ads; and draft messages to post on social media and other websites. Although these services are provided for free, investigators do have to pay if they choose to purchase advertising space or request larger printed materials such as banners.

“Our strategies depend on the diagnosis,” said Mandy Mansaray, a nurse and coordinator of the Clinical Research Volunteer Program within the Office of Patient Recruitment. “We always look at the target audience and do an analysis to determine where we can get these patients from.”

What’s more, the recruitment specialists can leverage their knowledge of the Institutional Review Board (IRB) approval process to ensure that recruitment strategies and materials move smoothly through it, preventing wasted time and unnecessary frustration.

“Some of our specialists have been here a long time, so they often can predict how the IRB will react to recruitment materials and whether the IRB would like something phrased or presented a certain way,” Freimuth said.

One of the researchers who is benefitting from the efforts of the Office of Patient Recruitment is Stephanie Chung, co-director of the Metabolic Research Program in the National Institute of Diabetes and Digestive and Kidney Diseases. She is conducting a clinical trial with young African-Americans who have type 2 diabetes. Recruiting for the study has been difficult because the condition is rare in young people. And most patients don’t understand how biomedical research can benefit them. The recruitment team, in collaboration with specialists from the CC’s Office of Communications and Media Relations, initiated a partnership with Children’s National Hospital in Washington, D.C. Children’s has the largest endocrinology program in the Northeast.

Through the partnership, NIH developed digital, video, and social-media content for Children’s to distribute to their physician and patient audiences. A low-cost video [https://www.youtube.com/watch?v=F699NsylZao] about the trial is posted on several websites including YouTube. Chung routinely shows it to her patients to encourage them to join her study. In addition, the NIH recruitment specialists developed a social-media strategy to target those patients directly and designed and mailed flyers to clinicians who work with that population so they can make their patients aware of the trial.

Representatives from these offices “really understood where we were coming from and what we were trying to do,” Chung said. “They understood we didn’t want to just promote a study. We wanted people to understand why this is important and how it is going to affect them and their families. I think part of the reason the campaign was so successful was that we had a great team.”

To learn more about the Office of Patient Recruitment and how to submit a request for services, visit http://intranet.cc.nih.gov/recruit/index.html. After your request has been submitted, a recruitment specialist will respond within three business days. If you have any questions, you can also call the office at 301-402-6380.