Putting it into Practice

Title: Defining and evaluating novel procedures for involving patients in Core Outcome Set research: creating a meaningful long list of candidate outcome domains.
Author: Smith H, Horobin A, Fackrell K, Colley V, Thacker B, Hall D and for the Core Outcome Measures in Tinnitus (COMiT) initiative
Date Published: 2018
Reference: Research Involvement and Engagement 4:8
Are service users or carers authors: Yes

Abstract: Outcome domains are aspects of a condition that matter to patients and clinicians and can be measured to assess treatment effects. For tinnitus, examples include ‘tinnitus loudness’ and ‘ability to concentrate’. This study focuses on the first stage of agreeing which outcome domains should be measured in all clinical trials of tinnitus. Crucially, it involves identifying outcome domains, prior to a voting process. This article describes how we effectively involved patients in that study design process, and reflects on the impact of their input. The study first compiled a long list of all possible outcome domains before asking interested parties, including patients, to vote which ones to include. Ensuring patients fully participate in this process holds unique challenges as it can be long, repetitive and its purpose far removed from their needs. These challenges may be addressed by involving patients in designing the research. There is evidence that other research teams are doing this, but its reporting is not detailed enough to guide others. Our paper seeks to address this. We describe how we involved patients (people living with tinnitus) in creating a long list of outcome domains that we included in our study. We also reflect on the benefits this brought. Two patients partnered with us in designing the survey. We also consulted an independent patient review panel. Involving patients reduced the list of domains included in the survey and made domain names and associated descriptions clearer. Our resulting survey performed well in recruiting and retaining patients as participants.

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Categories: journal article
relevant to all service users
general principles of good practice
designing of research

Date Entered: 2018/11/05

Date Edited: 2018/11/05

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