Setting Research Priorities for Type 1 Diabetes
For which topic were research priorities identified?
diabetes type 1
In which location was the research priority setting conducted?
Europe - United Kingdom
Why was it conducted at all?
Research priorities are often set by academic researchers or the pharmaceutical industry. The interests of patients, carers and clinicians may therefore be overlooked and research questions that matter may be neglected.
What was the objective?
to collect uncertainties about the treatment of Type 1 diabetes from patients, carers and health professionals, and to collate and prioritize these uncertainties to develop a top 10 list of research priorities
What was the outcome?
a ranking list of 10 research questions
How long did the research prioritization take?
No information provided.
Which methods were used to identify research priorities?
How were the priorities for research identified exactly?
Step 1: setting up PSP: forming steering group. Step 2: collecting uncertainties via survey: 1143 research questions suggested. Step 3: data processing: collating uncertainties, 118 uncertainties from DUETs database added, total of 88 uncertainties remained. Step 4: interim ranking: longlist of treatment uncertainties reviewed by steering group, steering group agreed on criterion that every uncertainty with more than 10 original submissions would form interim voting list, 25 uncertainties had more than 10 submissions and were automatically included in interim voting list, further 22 had fewer than 10 submissions but were supported by steering group as reflecting a broad portfolio of diabetes research and included, resulting in final list of 47 uncertainties to send out to participants, steering group agreed a-priori that every uncertainty with over 10 votes would be shortlisted for the final priority-setting workshop, resulting in 24 uncertainties with over 10 votes on shortlist. Step 5: final prioritization: workshop: all participants were sent the shortlist in advance so that they could individually reflect on the research questions prior to workshop, small group discussions, small group ranking, plenary session for consensus
Which stakeholders took part?
Patients, carers, health professionals and diabetes organizations. Survey: 583 participants. Workshop: 23 participants: 7 people with Type 1 diabetes, three carers ⁄ parents of people with Type 1 diabetes, 3 clinicians, 1 specialist nurse, 1 Patient and Public Involvement Manager for a Diabetes Research Network, diabetes charity representatives (1 of whom is also a parent of someone with Type 1 diabetes), 1 information specialist, 1 observer and 3 James Lind Alliance facilitators.
How were stakeholders recruited?
Distribution and awareness raising for the survey was carried out by each member organization of the partnership. The survey was also highlighted at the Diabetes UK annual professional conference in 2010. For the final workshop, partner organizations were invited to the workshop, with a limit of three places each. Additionally, all Steering Group members took part and further invitations were extended to ensure a balance of patients, carers and clinicians.
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 10 members: 9 representatives from organizations and 1 independent information specialist. The members met three times face-to-face and participated in five teleconferences to oversee the process, including the final priority-setting workshop. The group had voting rights and the mandate to reword treatment uncertainties where needed. The members were also involved in interim ranking.