Lessons from Our Rollout: Using MyChart to Recruit Research Participants
Failing to enroll enough participants is a leading reason clinical trials fail. In 2022, the University of Rochester Clinical and Translational Science Institute (UR CTSI) launched a service to recruit clinical trial participants using the MyChart patient health portal and published lessons learned from the roll-out in the Journal of Clinical and Translational Science.
The implementation team concluded that MyChart could be used to recruit patients into many different types of studies from a variety of medical specialties. Twenty-three percent of patients who received a research message through MyChart responded. Of the 1,878 patient responses, 34 percent expressed interest in a study and only five percent opted out of all future research messages.
“Patients tend to give feedback with their feet or in this case, their fingers,” said Carrie Dykes, PhD, lead author and director of Research Services for the UR CTSI. “The fact that we get over 20 percent of people responding from a cold calling point of view, is actually really good.”
But implementing this service was no trivial task. The University of Rochester is an opt-in institution, which means researchers cannot cold call or contact patients directly about research studies. This sort of policy, which is common among academic medical centers, protects patient privacy but creates a barrier for clinical trial recruitment.
“I think the biggest thing that made this implementation successful was that we engaged a lot of stakeholders, from patient privacy and advisory groups, to leadership, human subject protection offices, and so on,” Dykes said. “We really wanted to make sure everyone was comfortable implementing an opt-out tool at an opt-in institution.”
With input and buy-in from stakeholders, the team successfully launched the MyChart for Recruitment service in January 2022. But the team soon found that they needed to streamline the MyChart for Recruitment start up process.
On average, it took 231 days and nine to ten active administrative work hours for a study to progress from consultation to sending messages to patients. Researchers often needed help identifying patient cohorts in the electronic health record system and drafting plain-language descriptions of their studies, which may have contributed to the delay.
The team also discovered a need for better oversight and tracking of patient outreach. University of Rochester policy only allows study teams to send an initial study description to patients through MyChart and there’s currently no way to track subsequent outreach to patients.
Of the 636 patients who had responded with interest to a MyChart research message, 480 were still listed as “interested” in the MyChart for Recruitment system at the time the implementation team published the study. This could mean study teams never reached out or where unable to connect with those patients or that they connected with the patients but never updated their statuses in the system.
“That’s where Studypages could help,” said Dykes. “Study teams can put people who express interest in a study into Studypages and text, email, or phone them through the system, and that all gets tracked.”
Bundling services like Studypages and MyChart for Recruitment will provide the implementation team with better data on how studies are progressing through and benefiting from the system. That data will further drive process improvement.
Other authors of the paper include UR CTSI Co-Directors Karen Wilson, MD, MPH, and Martin Zand, MD, PhD; Ann Dozier, PhD, the Albert David Kaiser Chair of Public Health and Preventive Medicine at URMC and director of the Recruitment and Retention Unit at UR CTSI; Cody Gardner, MBA, UR CTSI study subject recruitment and retention leader; Jack Chang, PhD, MS, UR CTSI lead research informatician; and David Pinto, RN, UR CTSI clinical research informatician.
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The MyChart for Recruitment implementation was supported by the University of Rochester CTSA award number UL1 TR002001 from the National Center for Advancing Translational Sciences of the National Institutes of Health. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.
Susanne Pritchard Pallo | 12/4/2024
