Table 4.

Consumer Advisory Group evaluation survey.

Survey question	Responses
What did you most value about being a member of the Consumer Advisory Group?	• 'To contribute to the discussion, and the collective effort to better portray/understand SCI in media’ (Ma1). • ‘To help studies that will benefit people like myself’ (M2). • ‘I value the opportunity to be part of a project which may seek to one-day change how people with spinal cord injuries are portrayed which in turn impact the quality of life of people with spinal injuries’ (M3). • ‘I was given the opportunity & platform to add my voice. I felt my voice (and dis experience) was valued and used to assist with shaping the research program. It was a very different feeling to being a participant in research. There was a tangible feeling of sharing power and contributing to the direction of [the researcher’s] work’ (M4). • ‘Engagement with the other participants as well as [the research]. It was great to hear others and contribute’ (M5). • ‘Gave me the chance to think in a new way about the issues, and to feel my thoughts had weight. I also appreciated the qualitative approach, where our contributions evolved over time’ (M6).
Please tell us any challenges you may have had being a member of the Consumer Advisory Group.	• ‘The obvious challenge is the subjective subject matter; that it was a challenge for a consensus to be agreed on’ (M1). • ‘Remembering to respond to emails’ (M2). • ‘No challenges’ (M3). • ‘It was a great experience. Quite significant differences of opinion were valued equally. While Zoom in some ways made for a less personal experience, it also seemed to provide a safety zone for people to talk honestly from their home/ places of work’ (M4). • ‘I didn’t have any challenges. I felt very comfortable and relaxed. It was presented and facilitated very well’ (M5). • ‘None in particular’ (M6).
What enabled or motivated you to stay involved in the Consumer Advisory Group?	• ‘People were genuine and passionate, and that it is a subject matter that is enormously influential’ (M1). • ‘[The researcher’s] passion for the subject’ (M2). • ‘The content and findings were extremely motivating. The dynamics and conversation within the group was also a driving factor as there was a robust discussion which personally was extremely motivating’ (M3). • ‘Two main things. Believing in the research direction, and being made to feel like my contribution was valued and incorporated’ (M4). • ‘It is a very important subject, and I felt the need to get language in the community correct. It’s important to be heard and seen by the media and others as a person and not a number. Correct terms need to be used by them’ (M5). • ‘The researcher’s genuine curiosity and respect. The conversations with them and the group’ (M6).
Please provide any further comments about your experience and/or advice on how your experience could have been made better.	• ‘Keep the conversation going!’ (M1). • ‘Overall it was an enjoyable experience’ (M3). • ‘My experience was good. [The researcher] is amazing and passionate about the subject and wanted to make the research true and valuable’ (M5). • ‘I feel I’ve been able to express my thoughts along the way, and for them to be taken on board. This has been a particularly satisfying aspect of my participation, and I felt like a significant contributor to the study’ (M6).

^aConsumer Advisory Group member.