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|con_tas=refining wording of participant information, sharing views and advice about the process, proof-reading documents, providing feedback on surveys, analysing data, informing planning, and providing feedback on planned online discussions. Members of this grouping were also involved in checking the content of Genetics Society UK podcast, with the recording shared with all participants before dissemination to ask them to check the content was accurate and acceptable (https://web.archive.org/web/20200203055447/https://geneticsunzipped.com/blog/2020/1/16/family-secrets-revealed-by-genetic-testing) | |con_tas=refining wording of participant information, sharing views and advice about the process, proof-reading documents, providing feedback on surveys, analysing data, informing planning, and providing feedback on planned online discussions. Members of this grouping were also involved in checking the content of Genetics Society UK podcast, with the recording shared with all participants before dissemination to ask them to check the content was accurate and acceptable (https://web.archive.org/web/20200203055447/https://geneticsunzipped.com/blog/2020/1/16/family-secrets-revealed-by-genetic-testing) | ||
|con_met=participated in co-design process | |con_met=participated in co-design process; Clear communication about the intention of involving people | ||
|con_com=email, commenting on shared documents, telecommunications | |con_com=email, commenting on shared documents, telecommunications | ||
|con_rec=email invitation shared by member of sibling group with all known members of sibling group | |con_rec=email invitation shared by member of sibling group with all known members of sibling group | ||
|con_ena=Giving people time to read resources; | |||
|con_int=biologically related to other members of sibling group and lead researcher (Jack Nunn) | |con_int=biologically related to other members of sibling group and lead researcher (Jack Nunn) | ||
|con_dates=No | |con_dates=No | ||
Revision as of 06:55, 20 September 2021
State ongoing
Start 2018-10-01
Form updated 2021-09-20
Checked report data and contributed additional data
Checked report data and contributed additional data
Checked report data and contributed additional data
Checked report data and contributed additional data
Inputs
Jack Nunn (link)
ID: 0000-0003-0316-3254
Task: Led research project, involved in co-designing every stage of the process, leading participatory action research process, leading co-design of online surveys, leading co-design of online discussions, analysing feedback from co-design process, leading data analysis
Method: leading participatory action research process, leading co-design of online surveys, leading co-design of online discussions, analysing feedback from co-design process, leading data analysis
Communication: face to face meetings, telecommunications, online text-based discussions, email
Compensation: other(La Trobe University Postgraduate Research Scholarship)
Declared interests: biologically related to research participants
Research lead
Marilyn Crawshaw (link)
ID: 0000-0002-2870-0506
Task: Involved in co-designing every stage of the process, critically appraising research plan, analysing data
Method: Member of research team
Recruitment: personal introduction from members of sibling group
Communication: email, telecommunications, online text-based discussions
Declared interests: Previous research with members of sibling group, professional interest in research with donor-conceived people
Paul Lacaze (link)
ID: 0000-0002-0902-6798
Task: Involved in co-designing every stage of the process, critically appraising research plan, analysing data
Declared interests: PhD co-supervisor of Jack Nunn
Members of the sibling group who did not participate in online discussion (2)
Task: refining wording of participant information, sharing views and advice about the process, proof-reading documents, providing feedback on surveys, analysing data, informing planning, and providing feedback on planned online discussions. Members of this grouping were also involved in checking the content of Genetics Society UK podcast, with the recording shared with all participants before dissemination to ask them to check the content was accurate and acceptable (https://web.archive.org/web/20200203055447/https://geneticsunzipped.com/blog/2020/1/16/family-secrets-revealed-by-genetic-testing)
Method: participated in co-design process | Clear communication about the intention of involving people
Recruitment: email invitation shared by member of sibling group with all known members of sibling group
Communication: email, commenting on shared documents, telecommunications
Enablers: Giving people time to read resources
Declared interests: biologically related to other members of sibling group and lead researcher (Jack Nunn)
Members of the sibling group who did not participate in online discussion gave feedback on the planned research, including planned co-design process
Members of the sibling group who did participate in online discussion (3)
Task: refining wording of participant information, sharing views and advice about the process, proof-reading documents, providing feedback on surveys, analysing data, informing planning, and providing feedback on planned online discussions. Members of this grouping were also involved in checking the content of Genetics Society UK podcast, with the recording shared with all participants before dissemination to ask them to check the content was accurate and acceptable (https://web.archive.org/web/20200203055447/https://geneticsunzipped.com/blog/2020/1/16/family-secrets-revealed-by-genetic-testing). Members of this group were also sent the article and additional files to check the analysis and content and were invited to be authors of the Alpha version STARDIT report.
Method: participated in co-design process
Recruitment: email invitation shared by member of sibling group with all known members of sibling group
Communication: email, commenting on shared documents, telecommunications
Declared interests: biologically related to other members of sibling group and lead researcher (Jack Nunn)
Members of the sibling group who did participate in online discussion gave feedback on the planned research
0 (AUD)
25 hours
volunteering
Outputs and impacts
Start: 2018-10-01
End 2018-11-01
Impact: Improved understandability of resources
improved wording that was culturally appropriate (using terminology preferred by the sibling group to describe biological relations)
Impact: wording more appropriate and acceptable
improved online discussion design
Impact: online discussion design was improved by making questions more focussed and clear, thus improving quality of online discussions
improved learning resources for participants
Impact: learning and development resources were reported as helpful and useful
improved co-design process
Impact: language to describe the recruitment to the co-design process was made more comprehensible, helping people understand it was distinct from participating in the research project
Involving potential participants in co-defining language used to describe the sibling group helped ensure that language was acceptable and appropriate.
The co-design process took longer than expected owing to ethical ‘grey areas’ with no clear instruction on whether ethics approval was required to involve people in co-design. As a result an ethics application was made and subsequent feedback from the co-design process was integrated using modifications to the ethics application.
limitations in the ethics process affected the extent of how the sibling group could be involved in the study
The entire study team agreed that limitations in the ethics process affected the extent of how the sibling group could be involved in the study. Internationally, confusion still surrounds what ethical approval is required before involving potential participants in co-designing research. On the advice of the La Trobe University Human Research Ethics Committee, the study team did not approach potential participants about co-designing the study until after ethics approval had been granted, with feedback from participants being incorporated by a number of subsequent modifications to the original ethics application. As a result of the complex process of modifications, the timeline for feedback was shorter than the study team had anticipated, although the process did provide useful feedback.
Ambiguous policies for the ethical involvement of people in co-designing research can hamper the degree of control potential participants have in research and further clarity from ethics committees will enhance power sharing at this crucial stage of research.
Involving people in online discussions about involvement in research changes people’s views about who should be involved in research, including participants ‘widening’ their views about who should be involved in research to include more people.
Co-design changed study design
Feedback from participants resulted in changes to the study design including improving language used in recruitment, improving the online discussions and learning resources.
The process improved participants understanding about genomics and research.
Participants had an improved understanding of genomics. While participants showed a good-baseline level understanding of genomics, three reported their understanding about genomics and research increased as a result of participating in the study. However, some participants demonstrated a lack of self-confidence in their understanding, in spite of demonstrating a good understanding of the principles of genomic research, citing relevant peer-reviewed literature in discussions and discussing the nuances of ethical oversight.
Participants’ improved understanding about genomics and research helped them make informed decisions about invitations to join genomics research studies,
Invitations were shared with members of the sibling group after the process by researchers unconnected with this study.
Learning from this process informed subsequent discussions in the sibling group about participation in research, including a proposed self-managed biobank.
Method for future research co-design established. By co-creating methods of involving participants in proposed future genomics research, this process has demonstrated a practical and well-evaluated method of involving potential participants in co-designing research. 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.
Participants reported finding the learning resources useful (including infographics and videos).
Participants changed views and perspectives about genomics research as a result of participating
Four out of the six participants who completed the follow up survey noted their views and perspectives changed as a result of participating. One participant stated ‘I now realise how fast the field of genomics is changing and there are all kinds of implications especially in the field of precision medicine’ [P5]. One participant also indicated that involvement in research might help people make sense of their personal experience and added joining an online discussion ‘let me think beyond my emotion’ [P6]. Another stated ‘involving people in genomic research is crucial’ as it has ‘unknown consequences and needs as wider discussion as possible’[P4]. A number of participants had views about ‘leaving research to the qualified’ challenged by other participants [P9], with follow-up survey data suggesting that those challenged changed their views about who should be involved, towards widening. The changed views of the participants involved can be viewed as an impact of ‘transformative learning’.
Participants asked to stay involved in the research.
Impact: All participants who completed the follow-up survey requested to stay involved in the research process, including in analysing data and being co-authors on the paper
Participants enjoyed the online discussions
Participants stated the experience of participating was ‘interesting’ and they ‘enjoyed thinking about the questions posed and reading the responses of others’ and the ‘perceptive comments’ of the Facilitator [P7] [P4]. Another participant added that it ‘worked well’ as a way of involving people [P7].
It will be published open access in peer reviewed journals with identifying information removed in order to anonymise it as much as possible. (link)
Findability: It will be shared on a public domain repository. It will be shared with participants of the research and also other members of the sibling group who have joined it since the study commenced. Learning from this process has been presented at conferences, and will be shared on social media and through other channels. Preliminary learning was shared in a UK Genetics Society podcast.
Accessibility: It will be shared on a public domain repository.
Accessibility (URL): https://doi.org/10.21203/rs.3.rs-100595/v1
Interoperability (format): STARDIT report
Interoperability (methods): We used case study methodology to describe our experience involving participants in the co-design of the proposed study. We collected and analysed both qualitative and quantitative data during the involvement activities. We analysed data from online surveys and online discussions with participants. In addition, data from the study team communications was included, such as meeting notes, emails, reflexive diary entries and survey responses of study investigators. Coding and thematic analysis of qualitative data was carried out by two authors independently and checked by other authors.
Reusability (license): Creative Commons Attribution 4.0 International License
Reusability (attribution): The authors maintain ‘ownership’ of the data in the paper and is shared under the Creative Commons license used by the publishing journal.
Research data with identifying information will be stored by La Trobe University in line with ethical policies
Method: Contact La Trobe University
Ownership: Confidential data collected as part of the study is stored according to laws and the data access plan approved by La Trobe University. The authors maintain ‘ownership’ of the data in the paper and is shared under the Creative Commons license used by the publishing journal.
Steward: La Trobe University
Location: La Trobe University
Access status: Managed by La Trobe University
Access method: Contact La Trobe University
Enablers of involvement:
Giving people time to read resources.
Clear communication about the intention of involving people.
One participant noted that being ‘highly educated’ was an enabler for involvement and that having a ‘bit of time on their hands’ was also an enabler [P4]. Being ‘respectful’ when involving ‘those affected by genomic research’ will facilitate research as the ‘more brains applied to research, the more likely answer to puzzles will be found’ [P11]. Similarly, another participant stated ‘the more diverse the debate, the more dilute the effect of irrational preconception and ethical incompetence should become’ [P8]. One participant stated that whatever model was chosen, it should be ‘as flexible as possible’ [P5].
Four participants reported specific things about the way this study was conducted that enabled their involvement. One participant said the entire process was ‘assiduous’ and that the ‘intent of this project’ was ‘obviously thoughtful and interesting’[P9]. One participant said the ‘system seemed to work well’ [P7]. Another added that being used to online platforms like Loomio, or having previous experience of similar platforms and ‘used to’ that way of communicating might facilitate involvement using that communication mode. One participant suggested an alternative discussion format where the participants discussed a thread for 2 days and then had a 3-day break before coming to another thread [P7].
The Facilitator (MC) noted that regular contact with the study team and timely support was essential and they ‘could not have done it without this’.
Barriers of involvement:
Face-to-face meetings were difficult to organise. The study team was located in both Australia and the UK, so face-to-face meetings were not possible. Unclear communication about intentions and purpose of the involvement contributed to confusion (explaining how involvement is distinct from participation was challenging). Ensuring those involved had enough time to give feedback was also a challenge.
Barriers to involvement in research identified by participants included public fear and ‘hysteria’ caused by a lack of understanding, which may ‘hamper’ research, involvement, and general public support for research [P5]. Synchronous discussion was highlighted as another barrier if participants ‘are across time zones’ [P4]. One participant mentioned that they felt that their emotional response to some issues made it difficult to get involved in some ways [P6]. Being required to watch lengthy videos was identified as a barrier by one participant. One-to-one interviews were mentioned as being ‘quite straight-jacketed with circumscribed questions’ compared to more open online discussions [P4]. They also stated ‘I don't think that a group discussion would work as there are too many voices and some would be drowned out’ [P4]
Four participants reported specific things about the way this study was conducted that were barriers to their involvement. A discussion about boundaries revealed that some participants felt ‘avoiding topics which might trigger emotions which are stressful or unpleasant’ could be viewed as ‘restrictive, even censorious’ [P7]. The pace of the discussions was mentioned as moving ‘too quickly’ with another adding ‘more time’ was needed and study team should ‘reconsider the pace of the research’ [P7] [P4] [P5]. Updates from the discussion were sent to participants according to their preferences, and one stated they ‘lost track of emails’ and were sometimes unsure if they were ‘responding to the right part’ [P6]. Two participants stated the ‘platform presented technical difficulties’ [P4] and that it was ‘complicated’ [P5]. One participant stated the ‘premise and the purpose of the study could be clearer’ and that the various discussion threads were ‘difficult to untangle sometimes’ [P7]. They also mentioned it was ‘hard to be able to guarantee to do this every day for a period’ and that not doing so meant they ‘got lost’ [P7].
Another participant added that ‘it’s a difficult subject to discuss in a vacuum, without real life examples’ [P4]. One participant expressed ‘trepidation’ at sharing views about research and compared the feeling to getting an answer wrong in an ‘exam’ [P6].
The Facilitator (MC) stated that they felt more time was required in the co-design process.
Knowledge translation: 1. Knowledge from this process will inform the design of a future genomic research 2. Learning from this process can inform future involvement activities 3. Learning from this co-design process can inform future ways of involving people in genomic research including co-designing self-governed biobanks. 4. Learning from this process was shared in a Genetics Society UK podcast2, with the recording shared with all participants before dissemination to ensure the content was accurate and acceptable.