Site Spotlight: Patient Engagement Drives Rochester Clinical Research’s Retention Strategy
By establishing new patient engagement and community outreach roles, one New York-based research site is clearing recruitment and retention hurdles better than ever.
Like many recent adaptations in clinical research, the pandemic was largely the impetus behind Rochester Clinical Research’s (RCR) decision to expand its support for current and future trial participants. The new role of patient engagement specialist was first established to lighten the burden of conducting trials remotely by helping patients with unfamiliar, unrefined technology, but it has blossomed into a multifaceted position that bolsters outreach and patient retention, says Pat Larrabee, founder and CEO of RCR and a founding member of Medable’s Site Network Council.
RCR is located in Rochester, N.Y., a city with a population of approximately 211,328, according to the 2020 U.S. Census. The large, multitherapeutic site has 70 employees. In its 28-year history, the site has conducted more than 1,000 trials involving more than 40,000 participants. It conducts approximately 50 trials annually and 25 to 30 trials at any one time.
RCR began hiring patient engagement specialists from the tech-savvy generation, tasking the 20-something hires with training patients on diary apps and troubleshooting them when they didn’t work (which happens often). Essentially, the specialists served as help desks that are superior to vendor-provided support, Larrabee told CenterWatch Weekly. For example, one specialist was able to figure out a workaround for patients using a key data collection app that was malfunctioning.
But the role has proven to have utility beyond the single technological problem it was made to address, and the specialists’ support for participants has had positive effects on retention, satisfaction and engagement overall.
“Sometimes, subjects get so frustrated with the technology that’s thrown at them that they’re just going to give up and disappear,” Larrabee says. But with the new support system, RCR has higher retention rates and more useful data from participants. And the generation gap between specialist and participant hasn’t been a problem, she notes. “The older folks absolutely love the frequent contact.”
The patient engagement specialist role has evolved from a technical support service to become a retention tool, says Adam Larrabee, RCR’s president. In addition to fielding calls for tech assistance, the site’s engagement specialists dedicate hours of time per day to call trial participants, checking in to encourage them and thank them for taking part. This “concierge service” helps to engage patients, keeping them talking about their participation in clinical research and the site, and boosting recruitment and retention, he said.
This goes a long way toward motivating patients to stay through the entire trial and frees up busy research coordinators for patient visits.
This constant, frequent contact with participants also puts engagement specialists in a position to become aware of a serious adverse event or issue a patient may have forgotten to mention. These staff may not necessarily have medical training, but they can get a medically trained person on the call when they find out there’s a problem, Pat Larrabee noted.
Sites that are considering creating such a position should first evaluate their workload to see if that kind of position justifies the added overhead cost, she says. Trials that use a lot of phone contact, for instance, will see greater benefit from patient engagement specialists. RCR hires full-time staff for the role, which is considered a call center-level position with potential for advancement, and their performance is very trackable.
“We do expect them to be on the phone a certain number of hours a day,” Pat Larrabee said, “and they’re all assigned different studies. We know how many calls they make for each study. We are able to measure and track calls for training, we record some of the calls, so we’re able to look at this.”
In addition to the patient engagement role, RCR has created a community research branch that enables the site to partner with local physicians who don’t participate in trials and make it easy for them to refer their patients to RCR trials.
So far, the site has linked up with several specialty care and primary care practices. Physicians simply search their electronic medical records database for patients with diagnoses under study, send a letter or email to them or post a flyer in the office, and RCR follows up with patients who reach out to them. At the same time, the new division is supporting several medical specialists who are interested in conducting clinical research but lack the time or resources to become certified and compliant with the FDA.
“We’re finding that the physicians who have come and worked with us, they consider the research site sort of a sanctuary from the day-to-day madness of medicine, so they really enjoy the time to get to learn cutting-edge therapies and see patients in a little more paced environment,” Pat Larrabee said.
“The community research division is working out well as a method to offer more opportunities, both to recruit subjects from the community and for physicians to have a good experience in research,” she said.
This article launches what will be an occasional CenterWatch Weekly feature on sites that are implementing novel solutions to improve a site’s clinical operations.