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Table 1 Public Involvement Framework for PROM Development; Adapted from Carlton et al. [10]

From: Creativity in public involvement: supporting authentic collaboration and inclusive research with seldom heard voices

PROM development stage PI involvement
1. Establish a need for new or refined PROM - Review existing PROMs
- Critique existing PROMs
- Determine whether a new PROM is needed
2. Development of a conceptual framework - Review of conceptual model to ensure validity
3. Identifying item content - Input on study design
- Input on culturally appropriate issues
- Input on participant-facing documents
- Input on ethics and governance considerations
4. Item development - Analysis and interpretation of qualitative interviews
- Advice and input on working of potential items
5. Item reduction - Identify potentially redundant items
- Identify items that could benefit from rewording
- Input and advice in ordering of items
6. Pre-testing of items (cognitive interviews/debriefing) - Input on study design, methodology, recruitment, design and content of public facing document, and conducting the interviews
- Analysis and/or interpret results
7. Psychometric survey design - Input on study design
8. Psychometric survey analysis - Advice on the interpretation of the results
- Ensure validity of findings
9. Selection of items for the PROM - Advice on final selection of items
- Consideration of number of items to be included
- Advice and input into how PROM may be used in clinical settings
10. Design of the PROM - Advice and input of format and layout of PROM
- Advice on instructions of how to complete PROM, framing of questions, working of response options, and order of items
11. Dissemination and promotion of PROM - Co-authorship and co-presenting
- Advice on strategies for wider dissemination
- Input on content of materials to ensure appropriate language and terminology are used