Abstract
BackgroundBy participating in priority-setting activities in research, patients and members of the public help ensure that important questions are incorporated into future research agendas. Surveys, focus groups, and online crowdsourcing are increasingly used to obtain input, yet little is known about how they compare for prioritizing research topics. To address this gap, the Study of Methods for Assessing Research Topic Elicitation and pRioritization (SMARTER) evaluated participant satisfaction with the engagement experience across three prioritization activities.MethodsRespondents from Back pain Outcomes using Longitudinal Data (BOLD), a registry of patients 65 years and older with low back pain (LBP), were randomly assigned to one of three interactive prioritization activities: online crowd-voting, in-person focus groups using nominal group technique, and two rounds of a mailed survey (Delphi). To assess quality of experience, participants completed a brief survey; a subset were subsequently interviewed. We used descriptive statistics to characterize participants, and we analyzed responses to the evaluation using a mixed-methods approach, tabulating responses to Likert-scale questions and using thematic analysis of interviews to explore participant understanding of the activity and perceptions of experience.ResultsThe crowd-voting activity had 38 participants, focus groups 39, and the Delphi survey 74. Women outnumbered men in the focus groups and Delphi survey; otherwise, demographics among groups were similar, with participants being predominantly white, non-Hispanic, and college educated. Activities generated similar lists of research priorities, including causes of LBP, improving physician-patient communication, and self-care strategies. The evaluation survey was completed by 123 participants. Of these, 31 across all activities were interviewed about motivations to participate, understanding of activity goals, logistics, clarity of instructions, and the role of patients in research. Focus group participants rated their experience highest, in both the evaluation and interviews.ConclusionCommon methods for research prioritization yielded similar priorities but differing perceptions of experience. Such comparative studies are rare but important in understanding methods to involve patients and the public in research. Preferences for different methods may vary across stakeholder groups; this warrants future study.Trial registrationNICHSR, HSRP20152274. Registered 19 February 2015.
Highlights
By participating in priority-setting activities in research, patients and members of the public help ensure that important questions are incorporated into future research agendas
This included collaboration with a patient partner (MRS), who served as a member of the research team and participated in the development of the study from conception through study conduct; consultation with five patient advisors from the two Back pain Outcomes using Longitudinal Data (BOLD) clinical sites involved in recruiting participants for the registry (Henry Ford Health System [HFHS] in Michigan and Kaiser Permanente Northern California [KPNC]), which allowed for iterative consultation during study materials development; and consultation with the Comparative Effectiveness Research and Translation Network (CERTAIN) Back Pain Research Patient Advisory Group, a committee of 10 patient advisors established in 2014 by researchers at the University of Washington (UW) to support patient involvement across a number of ongoing research initiatives [18]
College educated participants were the majority in each activity, and there were more women than men in the focus groups and Delphi survey
Summary
By participating in priority-setting activities in research, patients and members of the public help ensure that important questions are incorporated into future research agendas. Focus groups, and online crowdsourcing are increasingly used to obtain input, yet little is known about how they compare for prioritizing research topics To address this gap, the Study of Methods for Assessing Research Topic Elicitation and pRioritization (SMARTER) evaluated participant satisfaction with the engagement experience across three prioritization activities. Focus group discussions with patients identified a need for evidence across treatment options (e.g., physical therapy, injections, complementary therapy, etc.) and effective education strategies [1]. This discrepancy highlights the need for contributions from patients and the public as research priorities are determined
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