A randomized controlled trial comparing in-person and wiki-inspired nominal group techniques for engaging stakeholders in chronic kidney disease research prioritization

Abstract

BackgroundFew studies have evaluated stakeholder engagement in chronic kidney disease (CKD) research prioritization. In this two-arm, parallel group randomized controlled trial, we sought to compare an in-person nominal group technique (NGT) approach with an online wiki-inspired alternative to determining the top 10 CKD research priorities, and to evaluate stakeholder engagement and satisfaction with each process.MethodsEligible participants included adults ≥18 years with access to a computer and Internet, high health literacy, and from one of the following stakeholder groups: patients with CKD not on dialysis, their caregivers, health care providers who care for patients with CKD, or CKD-related health policymakers. Fifty-six participants were randomized to a wiki-inspired modified NGT that occurred over 3 weeks vs. a 1-day in-person NGT workshop, informed by James Lind Alliance methodology, to determine the top 10 CKD-related research priorities. The primary outcome was the pairwise agreement between the two groups’ final top 10 ranked priorities, evaluated using Spearman’s correlation coefficient. Secondary outcomes included participant engagement and satisfaction and wiki tool usability.ResultsSpearman’s rho for correlation between the two lists was 0.139 (95 % confidence interval −0.543 to 0.703, p = 0.71), suggesting low correlation between the top 10 lists across the two groups. Both groups ranked the same item as the top research priority, with 5 of the top 10 priorities ranked by the wiki group within the top 10 for the in-person group. In comparison to the in-person group, participants from the wiki group were less likely to report: satisfaction with the format (73.7 vs.100 %, p = 0.011); ability to express their views (57.9 vs 96.0 %, p = 0.0003); and perception that they contributed meaningfully to the process (68.4 vs 84.0 %, p = 0.004).ConclusionsA CKD research prioritization approach using an online wiki-like tool identified low correlation in rankings compared with an in-person approach, with less satisfaction and perceptions of active engagement. Modifications to the wiki-inspired tool are required before it can be considered a potential alternative to an in-person workshop for engaging patients in determining research priorities.Trial registration(ISRCTN18248625)Electronic supplementary materialThe online version of this article (doi:10.1186/s12911-016-0351-y) contains supplementary material, which is available to authorized users.

Long‐term views on chronic kidney disease research priorities among stakeholders engaged in a priority‐setting partnership: A qualitative study

“…Some participants acknowledged potential advantages to the wiki, such as convenience and comfort expressing one's opinion. Further, many participants remarked upon the similarity between the final workshop and wiki top 10 lists . One patient, who expressed being sceptical initially, subsequently suggested the overlap in the two groups' priorities “proves the concept that there is some validity to this wiki stuff” (ID12).…”

“…This study was guided by a qualitative descriptive methodology, which allowed us to explore participants' experiences with the priority‐setting project and their individual approaches to determining CKD priorities. The full JLA process for this project has been described previously . Participants included CKD stakeholders from across Canada.…”

“…The steering committee ( n = 13) met regularly over a 1‐year period to determine a priorities' shortlist, from which the final 10 priorities were ranked. In the final prioritization step, we compared a traditional, 1‐day, in‐person workshop held in Toronto, Canada, in June 2015 ( n = 26) to a 2‐week, online, wiki‐like process ( n = 27) for group ranking of the priorities . Eleven of the steering committee members attended the in‐person workshop (as participants or facilitators).…”

“…The final step of this internationally recognized process includes a 1‐day workshop where participants convene to discuss and rank the top 10 research priorities. To address the limitations of an in‐person meeting, such as travel and resource requirements, we conducted a randomized controlled trial comparing the traditional in‐person workshop to a novel, online wiki‐like platform for ranking the final priorities . Although there was some overlap between the two groups' top 10 priorities, findings from a post‐intervention survey indicated that wiki participants felt they were less able to express their views and contribute meaningfully .…”

“…To address the limitations of an in‐person meeting, such as travel and resource requirements, we conducted a randomized controlled trial comparing the traditional in‐person workshop to a novel, online wiki‐like platform for ranking the final priorities . Although there was some overlap between the two groups' top 10 priorities, findings from a post‐intervention survey indicated that wiki participants felt they were less able to express their views and contribute meaningfully . The priorities identified through this exercise, as well as those from a related JLA partnership for those with advanced CKD on or nearing dialysis, were used to inform all research projects within a national patient‐oriented kidney research programme in Canada …”