Identifying and Prioritizing Unmet Research Questions for People with Tinnitus: The James Lind Alliance Tinnitus Priority Setting Partnership

Hall et al. (2013) full text summary PDF

For which topic were research priorities identified?

tinnitus

In which location was the research priority setting conducted?

Europe - United Kingdom

Why was it conducted at all?

Tinnitus represents a major burden of disability, yet there is scant evidence for effective management strategies and a lack of clinical trials to formally test even some of the most commonly used drugs and medical devices.

What was the objective?

to provide a platform for patients and clinicians to collaborate to identify and prioritize uncertainties or ‘unanswered questions' that they agree are the most important supporting clinical research

What was the outcome?

a ranking list of 10 research questions

How long did the research prioritization take?

October 2011 - July 2012

Which methods were used to identify research priorities?

JLA method

How were the priorities for research identified exactly?

Step 1: setting up PSP: establishing partnership, establishing steering group. Step 2: collecting research priorities: via survey: collecting suggestions for research on the assessment, diagnosis & treatment of tinnitus: survey, 2483 responses submitted. Step 3: data processing: checking and categorizing submitted uncertainties: thematic analysis, check for in scope questions, combing questions, check sufficient reliable evidence existing, 170 distinct questions. Step 4: interim ranking: survey asking participants to select and then rank their top ten personal most important uncertainties, steering group agreed on a final set of 26 important uncertainties. Step 5: final prioritization: workshop: small group discussions, small group rankings, small group rankings combined into plenary ranking.

Which stakeholders took part?

People with tinnitus, clinicians, scientists. Survey: 638 tinnitus sufferers, 159 clinicians, 28 unknown. Interim ranking: 550 tinnitus sufferers, 9 patient representatives, 71 clinicians. Workshop: 9 patient representatives, 9 clinicians,3 facilitators, 5 observers.

How were stakeholders recruited?

The survey was publicized at the London (UK) launch meeting in December 2011 and widely disseminated through the working partnership and on the BTA and JLA websites. For the second survey, the working partnership played a major role in distributing the questionnaire, with a hard copy being posted out with the Spring 2012 issue of the BTA's Quiet magazine.

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 broad representation of people from the field of tinnitus in the UK, including professional bodies, charities and advocators for people with tinnitus. The members oversaw the project, designed the survey and were involved in data processing.