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Table 3 Summary of key contributions of expert service users at different stages, challenges and extra resource implications

From: Public involvement in health outcomes research: lessons learnt from the development of the recovering quality of life (ReQoL) measures

Stages Key contributions Challenges Resource implications
1. Theme and item generation Ensured that themes were relevant and that no themes were missing
Ensured that items generated were meaningful
  Time for PI to prepare for (1 day) and attend 2 face-to-face meetings (2 daysa).
2. Face and content validity Co-produced the topic guide
A service user researcher was involved in the interviewing and data analysis
The data analysis was reviewed by expert service users to help to reduce the number of items, ensuring the face and content validity of the measures
At the end of this stage, we were confident that no important item was missing and that items were appropriate
At the meeting to reduce the number of items (by about 40), expert service users added 58 extra items
Disagreement on certain items
Time for PI to prepare for (half day) and attend 2 face-to-face meetings (2 days a)
Time for researcher to prepare materials for Expert Service Users Group Meeting (2 days), attend the meeting (1.5 days), write up the feedback of the meeting (2 days)
Added 3 more weeks to the timeline to schedule 2 more core team meetings to reduce the number of items
3. Quantitative studies Helped in making the final item selection
Ensured that the measures had face validity
Conveying psychometrics results to the expert service user group
Disagreements on certain items
Trade-off between psychometric properties and face validity
3 days for PI to prepare for meetings and 2 days to attend meetings
4. Implementation and dissemination Contributed to making the research more accessible to others Required support to work on papers and presentations 4 days of PI work to prepare and be involved in the filming.
  1. aDepending on the location of the meetings, for some expert service users attending a face-to-face took a whole day for others it might be half a day