The first time Dru Evarts volunteered for a research study at Ohio University, she didn’t meet its criteria for participants. But she kept trying, and to date the 88-year-old retired OHIO journalism professor has taken part in four different research projects, including one at the Heritage College of Osteopathic Medicine.
She cites two motivations. “One is a real interest in research – I love it!” she explained. “The second one is loyalty to the university and to seniors. Most of the studies I’ve been in have involved seniors.”
Evarts has become a kind of pied piper for Brian Clark, Ph.D., executive director of the Ohio Musculoskeletal & Neurological Institute and Osteopathic Heritage Foundation Harold E. Clybourne, D.O., Endowed Research Chair at the Heritage College. Evarts’ success in persuading people to sign up for Clark’s aging-related studies has earned his gratitude.
“I am now his chief recruiter of other research subjects,” Evarts said. “In fact, he’s named an award after me!”
Willing research participants are priceless to scientists because carrying out a health-related study takes not only funding, review board approval, scientific expertise, trained staff and the right equipment – it also requires a big-enough cohort of people to study.
More data from more participants means stronger findings. A shortage of subjects, on the other hand, can end a study before data collection starts.
“Sometimes studies have to stop prematurely because there are just not enough people who volunteer,” said Megan Cochran, who as community outreach and engagement specialist recruits subjects from the university and beyond for studies in the Clinical and Translational Research Unit, a major hub for research at the Heritage College.
Taking part in a study benefits participants as well as researchers. For some, the attraction is watching up close how scientists work. For others, the best part is the chance to alleviate suffering for future patients. Many studies pay a cash stipend. A research participant may get free medical screenings. A study may even offer someone with a serious health condition cutting-edge treatment.
Perry County resident Bryan Hinkle has an immune disease affecting the peripheral nervous system. Four years ago, he took part in a study at Northwestern University, testing a way of treating such disorders by depleting the immune system with chemotherapy and then re-introducing the patient’s own stem cells.
“The medication I had been taking had stopped working,” Hinkle recalled. “I had gone from being pretty well fully active with the medication to being in a wheelchair.” After the clinical trial, “I went from a wheelchair to now working full time, driving, everything. This clinical trial that I went through, it gives people hope when there’s no hope.”
Research participation is also a great way to support the college and the university.
As Heritage College events specialist, Elizabeth Lehman’s job is organizing special occasions, but she considers her unofficial duties to include enhancing the student experience by taking part in any research study that accepts her. Many studies include students on the research team.
“I take the surveys for every study they send out,” Lehman said. “I’m not always selected. But I don’t get a lot of student interaction, so I’m always trying to figure out ways to really give back to the student experience for our college. And volunteering as a research subject seemed to be the best way for me to do that.”
The value researchers place on their subjects shows in how they’re treated. According to CTRU Research Nurse Cammie Starner, R.N., keeping subjects safe and comfortable, making sure they’re fully informed on what a study entails, and maintaining strict confidentiality are of the highest priority. It’s made clear that a subject can withdraw at any time, with no repercussions and no arm-twisting.
“It’s totally voluntary,” Starner said. “I always say, ‘We want you to go into a study thinking that you can complete it.’ But life happens. You don’t know what’s going to happen, especially in a longer study. So I just ask that they give us a call and let us know (if they’re dropping out).”
The commitment to a welcoming atmosphere extends to details such as reserved parking, flexible scheduling, minimal wait times and pleasant surroundings. “It wasn’t scary or intimidating,” Lehman said of her experience. “They kind of gave me rock star treatment.”
Research participation varies by project, from answering survey questions to studies involving exercise or having blood drawn.
“We have studies that are a one-time visit, not invasive,” said CTRU Executive Director Laura Rush, D.V.M, Ph.D. “And then we have some that are longer, and maybe you have invasive procedures. There’s no one size fits all.”
At any given time, multiple studies are underway in the college and university. CTRU lists its current studies online and offers information about research participation. The organization Research Match lets potential subjects search studies by topic and indicate their interest without sharing their identities. The Center for Information and Study on Clinical Research Participation also provides information on being a research subject.
On Tuesday, May 16, from noon-1 p.m., CTRU will host a brown bag lunch-and-learn event in Grosvenor West 111 in Athens on the importance of research and what it is like to participate in research studies. The event will be accessible via teleconference from MEB1-415 at the Heritage College, Dublin, and SPS-243 at the Heritage College, Cleveland.
Rush and Cochran said that for Ohio University employees, students or alums, taking part in research is a way to both advance the Heritage College and university’s mission, and improve treatments. Without trials of new drugs and procedures, Cochran noted, advances in health care would stop.
“Anything that you do for your health has had to go through the process to be approved,” she pointed out.