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Table 6 Summary of outcomes from the process

From: Co-designing genomics research with a large group of donor-conceived siblings

Outcome Summary and learning point
1. Improved understanding of genomics informed participation in future research Participants reported their understanding about genomics research increased as a result of participating in the study. Learning from this process informed subsequent discussions in the sibling group about participation in research, including a proposed self-managed biobank
2: Learning resources useful Participants reported finding the information resources and videos useful. Learning point: Creating learning resources in multiple formats (hyper-text, infographic summaries, videos with subtitles animations) will ensure that information is more useful for people with neuro-diverse learning needs
3: Changed views and perspectives as a result of participation Participants reported their views and perspectives changed as a result of participating. Learning point: Online discussion facilitated collaborative learning and the changed views of participants can be viewed as an impact of ‘transformative learning’ [39, 69, 70]
4: Participants asked to stay involved in the research All participants who completed the follow-up survey opted to stay involved in the research process. Learning point: Participants demonstrated ‘critical reflexivity’, a stage of participatory action research which asks people involved to reflect on their views and the causes of problems and to be involved in exploring any solutions and the actions that people can take to bring about improvements [69, 71, 72]
5: Participants enjoyed the online discussions Participants stated the experience of participating was ‘interesting’ and they ‘enjoyed’ it [P7] [P4], despite some usability barriers. Learning point: Some participants stated they preferred online discussions over face to face discussion or interviews, which highlights the importance of mapping potential participants’ preferences when co-designing involvement, to ensure research methods meet the needs of participants
6: Improved understanding of how to get involved in research Participants reported improved understanding of how to get involved in research; this helped inform decision making for individuals when invitations were sent to members of the group to participate in genomics research after this study and unconnected to this study [22]. Learning point: Pre and post discussion surveys and standardised reporting (STARDIT-PM) are useful tools for mapping changes in understanding and views [20, 71]
7: Co-design changed study design Feedback from participants resulted in changes to the study design including improving language used in recruitment and learning resources. Learning point: Involving participants in helping co-create learning resources can improve them
8: Method for future research co-design established Participants stated that the methods used in this process could be helpful when co-designing future stages of proposed genomic research with the sibling group. Learning point: STARDIT can be used to map preferences and impacts from future co-design processes [20]. Learning from this process is relevant to sub-populations where people share recent ancestry such as some Indigenous populations [9, 10, 66], and sub-populations of people affected by rare diseases67