What are the Most Important Unanswered Research Questions in Trial Retention? A James Lind Alliance Priority Setting Partnership: The PRioRiTy II (Prioritising Retention in Randomised Trials) Study
For which topic were research priorities identified?
retention in randomized trials
In which location was the research priority setting conducted?
Europe - United Kingdom
Why was it conducted at all?
One of the top three research priorities for the UK clinical trial community is to address the gap in evidencebased approaches to improving participant retention in randomised trials. Despite this, there is little evidence supporting methods to improve retention.
What was the objective?
to identify and prioritize unanswered questions and uncertainties around trial retention in collaboration with key stakeholders
What was the outcome?
a ranking list of 10 research questions
How long did the research prioritization take?
Survey: March 2018 - May 2018. Interim ranking: August 2018 - September 2018. Workshop: October 2018
Which methods were used to identify research priorities?
How were the priorities for research identified exactly?
Step 1: collecting research questions: survey with questions about retention in randomized trials. Step 2: data processing: responses coded into thematic groups to create a longlist of questions, longlist of questions checked against existing evidence, longlist of 105 total questions, merging similar questions, generating shortlist of 33 questions. Step 3: back-categorization: stakeholders asked for feedback and comments, indicative list of 27 questions generated. Step 4: interim ranking: via survey, participants were asked to choose up to 10 of the questions that they believed were the most important, total score for each question as overall number of times the question was selected and ranked weighted scores calculated, ordered list of 21 unanswered research questions generated. Step 5: final prioritization: workshop: participants were provided with the list of 21 questions in advance of the workshop to allow time to familiarize themselves with the questions and consider their thoughts on the importance of each one, during workshop small group discussions and small group rankings, plenary agreement on final list
Which stakeholders took part?
Patients or members of the public involved in a trial, frontline staff or other staff involved in trial retention, investigators, and trial methodologists. Survey: 456 participants. Interim ranking: 886 participants. Workshop: 30 stakeholders across the four groups, comprising 12 patients, 9 clinicians, and 9 total researchers and other staff.
How were stakeholders recruited?
Initial online survey: Convenience sampling was used to sample survey respondents. Steering Group members, including the patient partners, identified and engaged a wide range of appropriate potential stakeholders through their networks of contacts. a weblink to the survey to the four stakeholder groups and also promoted the survey through social media channels and Twitter hashtags. Interim survey: Invitations to this survey were open to anyone, and not restricted to the participants from the initial survey. The project team distributed the survey link through email, institution websites, blogs, newsletters, and social media. The HSRU at the University of Aberdeen also issued a press release and coordinated promotion alongside the JLA.
Were stakeholders actively involved or did they just participate?
Stakeholders not only participated but were also actively involved in the research prioritization process: They were part of a steering group. The steering group consisted of 24 members: 6 patient partners (3 with experience of trials methodology research and 3 without), 6 frontline staff or other staff involved in trial retention, 5 investigators, 5 trial methodologists, and 2 JLA representatives. The members were involved in all steps.