Expanded program helps researchers engage study participants
The Research Participation Program provides resources and tools to help Stanford researchers with one of the more challenging aspects of conducting clinical studies — engaging participants. This newly expanded program provides one-on-one consultations, a webpage full of participant engagement ideas, and technology-driven networks for enlisting study participants and collaborators both inside and outside of Stanford Medicine.
Leading this effort is Katherine Connors, the Program Manager for Research Participation in the School of Medicine’s Research Office. In addition to managing the day-to-day operations of this program, she’s promoting a cultural shift in the way Stanford Medicine interacts with its research volunteers.
“We want to engage participants as our partners in research,” said Connors, who has developed a checklist of participant-focused needs that help put researchers “in the shoes” of patients as they draft a participant engagement plan. She feels that this proactive community engagement is not only ethically important, but it helps to build trust, encourage volunteerism, and promote the adoption of research findings. To strengthen community ties, the program is collaborating with the Office of Community Engagement to develop a consultation service with community health ambassadors.
Connors is also working to improve the quality of communications between patients and their Stanford physician researchers. To that end, the Research Participant Program website includes templates for advertising and recruitment letters worded in a way that reminds volunteers of the personal and societal benefits of participating in research.
With faculty leads Karl Sylvester, MD, and Ken Mahaffey, MD, the program will launch a series of online participant engagment tools in 2020, to make it easier for investigators to communicate to potential participants about new studies, through electronic means that comply with privacy regulations. These tools will allow researchers to:
- Send study invitations to potential participants through Stanford’s Epic MyChart/MyHealth electronic record systems.
- Email study invitations to healthy participants for well studies or randomized controlled trials.
- Post studies to a new Stanford Research Registry, a database where individuals can sign up to be contacted via email about disease-specific or healthy volunteer research studies.
In partnership with Stanford Children’s Clinical Research Support Office, the Research Participation Program provides expertise for reaching pediatric populations. With Stanford Health Care, the Program is exploring marketing collaborations and the use of the Epic system for research. For researchers looking for rare-disease or special population participants, the program has established recruiting networks with other academic-research institutions. These initiatives, funded by Stanford’s Clinical and Translational Science Awards (CTSA) program in the National Institutes of Health (NIH), include:
The Trial Innovation Network (TIN): trialinnovationnetwork.org
This collaborative enables Stanford researchers to submit study proposals to designated contacts at participating research institutions to quickly identify potential partners for multi-site studies.
Accrual to Clinical Trials (ACT) Network: https://www.actnetwork.us/National
This multi-site cohort exploration network allows Stanford researchers to remotely search deidentified patient records at other institutions to identify potential research participants and co-investigators at multiple sites.
UC BRAID: https://www.ucbraid.org
This University of California-Stanford collaboration is working to share best practices that improve the cost, efficiency, and effectiveness of study participant recruitment approaches across California.
To request a consultation with the Research Participation Program, send an email to EngageParticipants@stanford.edu. Their staff can assist you in reviewing engagement materials, using Stanford’s cohort exploration tools, or accessing the Trial Innovation Network (TIN) and Accrual to Clinical Trials (ACT) resources.