Abstract
Translating research findings into practice requires understanding how to meet communication and dissemination needs and preferences of intended audiences including past research participants (PSPs) who want, but seldom receive, information on research findings during or after participating in research studies. Most researchers want to let others, including PSP, know about their findings but lack knowledge about how to effectively communicate findings to a lay audience. We designed a two-phase, mixed methods pilot study to understand experiences, expectations, concerns, preferences, and capacities of researchers and PSP in two age groups (adolescents/young adults (AYA) or older adults) and to test communication prototypes for sharing, receiving, and using information on research study findings. PSP and researchers agreed that sharing study findings should happen and that doing so could improve participant recruitment and enrollment, use of research findings to improve health and health-care delivery, and build community support for research. Some differences and similarities in communication preferences and message format were identified between PSP groups, reinforcing the best practice of customizing communication channel and messaging. Researchers wanted specific training and/or time and resources to help them prepare messages in formats to meet PSP needs and preferences but were unaware of resources to help them do so. Our findings offer insight into how to engage both PSP and researchers in the design and use of strategies to share research findings and highlight the need to develop services and support for researchers as they aim to bridge this translational barrier.
Highlights
Translating research findings into practice requires understanding how to meet communication and dissemination needs and preferences of intended audiences including past research participants (PSPs) who want, but seldom receive, information on research findings during or after participating in research studies
In-person focus groups were conducted among PSP completing the survey and one-on-one interviews were conducted among researchers
Participants in either the interviews or focus groups responded to a set of questions from a discussion guide developed by the study team and reviewed three prototypes for communicating and disseminating study results developed by the study team in response to PSP and researcher survey responses: a study results letter, a study results email, and a webbased communication – Mail Chimp (Figs. 1–3)
Summary
Translating research findings into practice requires understanding how to meet communication and dissemination needs and preferences of intended audiences including past research participants (PSPs) who want, but seldom receive, information on research findings during or after participating in research studies. Since 2006, the National Institutes of Health Clinical and Translational Science Awards (CTSA) have aimed to advance science and translate knowledge into evidence that, if implemented, helps patients and providers make more informed decisions with the potential to improve health care and health outcomes [1,2] This aim responded to calls by leaders in the fields of comparative effectiveness research, clinical trials, research ethics, and community engagement to assure that results of clinical trials were made available to participants and suggesting that providing participants with results both positive and negative should be the “ethical norm” [1,3]. Authors noted that no systematic approach to operationalizing this “ethical norm” existed and that evidence was lacking to describe either positive or negative outcomes of sharing clinical trial results with study participants and the community [4]. But not supported by research, that sharing would result in better patient–physician/researcher communication, improvement in patient care and satisfaction with care, better patient/participant understanding of clinical trials, and enhanced clinical trial accrual [4]
Sign-in/Register to view highlights & summary Talk to us
Join us for a 30 min session where you can share your feedback and ask us any queries you have
Schedule a callDisclaimer: All third-party content on this website/platform is and will remain the property of their respective owners and is provided on "as is" basis without any warranties, express or implied. Use of third-party content does not indicate any affiliation, sponsorship with or endorsement by them. Any references to third-party content is to identify the corresponding services and shall be considered fair use under The CopyrightLaw.
