Co-Designing Genomics Research With A Large Group of Donor-Conceived Siblings

2020 ◽  
Author(s):  
Jack Nunn ◽  
Marilyn Crawshaw ◽  
Paul Lacaze
Keyword(s):  
Online Survey ◽  
Online Discussion ◽  
Research Process ◽  
Discussion Forum ◽  
Genomic Research ◽  
Future Research ◽  
Large Group ◽  
High Interest ◽  
Online Discussion Forum ◽  
Genomics Research

Abstract Background: Human genomics research is growing rapidly. More effective methods are required for co-design and involving people, especially those from vulnerable sub-populations of inherently high interest to medical research. This case study documents how we worked with a large group of donor-conceived siblings who share the same sperm donor father, to explore how they might want to engage with and influence any future genomic research. Method: A participatory action research process was used to explore the views of a group of 18 known donor-conceived siblings; who are part of a larger group of up to 1000 people who share the same biological father. The discussion explored views about how the group would like to be involved in future research. Five members participated in co-design; 12 completed a pre-discussion online survey; and six participated in an online discussion forum and evaluation survey. The online discussion was led by one facilitator, supported by the study team. Results: Co-design informed the research process. Participants reported enjoying the overall experience of the surveys and discussion forum, which were perceived as inclusive and flexible. Most participants’ views regarding the value of involvement in research changed during the process, and ‘widened’ about who should be involved. Participants were supportive of future research being done with the siblings group. All who completed the final survey requested to remain part of the co-design process. Other themes in the online discussion included concerns about conflicting interests and a desire for research participation to improve the situation for people affected by assisted conception. The process informed later discussions in the sibling group about participating in a self-managed biobank and informed decision making about participating in genomics research. Conclusion: Findings from this study help inform how people from certain sub-populations should be involved in planning and defining their participation in genomic research; particularly those from more vulnerable or high-interest populations. This process provides a replicable and practical method of involving potential participants in co-designing genomics research using online discussions, with reported positive outcomes. Reporting this study using ‘Standardised data on initiatives (STARDIT)’ to report the process allows comparison with other studies.

scholarly journals Co-designing genomics research with a large group of donor-conceived siblings

2021 ◽  
Vol 7 (1) ◽  
Author(s):  
Jack S. Nunn ◽  
Marilyn Crawshaw ◽  
Paul Lacaze
Keyword(s):  
Medical Research ◽  
Online Discussion ◽  
Research Process ◽  
Discussion Forum ◽  
Genomic Research ◽  
Future Research ◽  
Sperm Donor ◽  
Large Group ◽  
High Interest ◽  
Genomics Research

Abstract Background Human genomics research is growing rapidly. More effective methods are required for co-design and involving people, especially those sub-populations which are inherently high interest to medical research and thus at greater risk of being exploited. This case study documents how we worked with a large group of donor-conceived siblings who share the same sperm donor father, to explore how they might want to engage with and influence any future genomic research. Method A participatory action research process was used to explore the views of a group of 18 people who knew they are donor-conceived siblings. They are part of a larger group of up to 1000 people who share the same sperm donor father but the only ones in contact with each other; it is likely that many of the uncontacted siblings are unaware of their biological father, have been unable to trace others or have died. The discussion explored views about how the group would like to be involved in future research. Five members participated in co-design; 12 completed a pre-discussion online survey; and six participated in an online discussion forum and evaluation survey. The online discussion was led by one facilitator, supported by the study team. Results Of the 18 siblings approached in 2018, 14 participated in the co-design stages or the surveys and online discussion. Co-design informed the research process. Participants reported enjoying the overall experience of the surveys and discussion forum, which were perceived as inclusive and flexible. Most participants’ views regarding the value of involvement in research changed during the process, and ‘widened’ about who should be involved. Participants were supportive of future research being done with the siblings group. All who completed the final survey requested to remain part of the co-design process. Other themes in the online discussion included concerns about conflicting interests and a desire for research participation to improve the situation for people affected by assisted conception. The process informed later discussions in the sibling group about participating in a self-managed biobank and informed decision making about participating in genomics research. Conclusion Findings from this study help inform ways in which people from certain sub-populations can be involved in planning and defining their participation in genomic research, particularly those that are inherently high interest to medical research and thus at greater risk of exploitation. This process provides a replicable method of involving potential participants in co-designing genomics research using online discussions, with positive outcomes. Reporting this study using ‘Standardised data on initiatives (STARDIT)’ to report the process allows comparison with other studies.

scholarly journals Involving people affected by a rare condition in shaping future genomic research

2021 ◽  
Author(s):  
Jack Nunn ◽  
Kylie Gwynne ◽  
Sarah Gray ◽  
Paul Lacaze
Keyword(s):  
Study Design ◽  
Online Community ◽  
Online Survey ◽  
Online Discussion ◽  
Rare Condition ◽  
Research Process ◽  
Online Discussions ◽  
Genomic Research ◽  
Future Research ◽  
Learning Resources

Abstract Background There is evidence that involving potential participants and the public in co-designing research can improve the quality of the study design, recruitment and acceptability of the research, but appropriate methodologies for doing this are not always clear. In this study we co-designed a way of involving people affected by a rare genomic disease in shaping future genomic research about the condition. The aim was to report the process, experiences and outcomes of involving people in genomic research in a standardised way, in order to inform future methods of involvement in research co-production. Method Participants were recruited from an online community hosted by an Australian-based rare disease charity and were over the age 18 years. Once people gave consent, we shared learning resources with participants and invited them to complete an online survey before joining a two-week facilitated online discussion, followed by a second online survey. We used the novel tool ‘Standardised Data on Initiatives - Alpha Version 0.1’ (STARDIT) to map preferences, plan involvement and report any outcomes from the process, with quantitative data analysed descriptively and qualitative data thematically analysed. Results Of the 26 people who gave consent and completed the initial survey, 15 participated in the online discussion and 12 completed the follow-up survey. STARDIT was used to report six outcomes from the process, including 60% of participants’ responses showing a change towards ‘widening’ their view of who should be involved in research to include more people. Outcomes also included an improved understanding of research and how to be involved. Participants enjoyed online discussions, found learning resources useful and asked to stay involved in the research process. The partner organisation reported that a similar online discussion will be used in future research prioritisation processes. Conclusion Involving people in co-designing the process improved the study design, ensuring it met the needs of participants. Whilst the study includes participants from only one disease group, using STARDIT allowed us to map people’s preferences and report the methods and outcomes from involving people, providing a way for learning from this case study to inform future research studies beyond the discipline of public health genomics.

scholarly journals Involving people affected by a rare condition in shaping future genomic research

2021 ◽  
Vol 7 (1) ◽  
Author(s):  
Jack S. Nunn ◽  
Kylie Gwynne ◽  
Sarah Gray ◽  
Paul Lacaze
Keyword(s):  
Study Design ◽  
Online Community ◽  
Online Survey ◽  
Online Discussion ◽  
Rare Condition ◽  
Research Process ◽  
Online Discussions ◽  
Genomic Research ◽  
Future Research ◽  
Learning Resources

Abstract Background There is evidence that involving potential participants and the public in co-designing research can improve the quality of the study design, recruitment and acceptability of the research, but appropriate methodologies for doing this are not always clear. In this study we co-designed a way of involving people affected by a rare genomic disease in shaping future genomic research about the condition. The aim was to report the process, experiences and outcomes of involving people in genomic research in a standardised way, in order to inform future methods of involvement in research co-production. Method Participants were recruited from an online community hosted by an Australian-based rare disease charity and were over the age 18 years. Once people gave consent, we shared learning resources with participants and invited them to complete an online survey before joining a two-week facilitated online discussion, followed by a second online survey. We used the novel tool ‘Standardised Data on Initiatives - Alpha Version 0.1’ (STARDIT) to map preferences, plan involvement and report any outcomes from the process, with quantitative data analysed descriptively and qualitative data thematically analysed. Results Of the 26 people who gave consent and completed the initial survey, 15 participated in the online discussion and 12 completed the follow-up survey. STARDIT was used to report six outcomes from the process, including 60% of participants’ responses showing a change towards ‘widening’ their view of who should be involved in research to include more people. Outcomes also included an improved understanding of research and how to be involved. Participants enjoyed online discussions, found learning resources useful and asked to stay involved in the research process. The partner organisation reported that a similar online discussion will be used in future research prioritisation processes. Conclusion Involving people in co-designing the process improved the study design, ensuring it met the needs of participants. Whilst the study includes participants from only one disease group, using STARDIT allowed us to map people’s preferences and report the methods and outcomes from involving people, providing a way for learning from this case study to inform future research studies beyond the discipline of public health genomics.

scholarly journals Involving People Affected by a Rare Condition in Shaping Future Genomic Research

2020 ◽  
Author(s):  
Kylie Gwynne ◽  
Sarah Gray ◽  
Paul Lacaze ◽  
Jack S Nunn
Keyword(s):  
Study Design ◽  
Online Community ◽  
Online Survey ◽  
Online Discussion ◽  
Rare Condition ◽  
Research Process ◽  
Online Discussions ◽  
Genomic Research ◽  
Future Research ◽  
Learning Resources

Abstract Background There is evidence that involving potential participants and the public in co-designing research can improve the quality of the study design, recruitment and acceptability of the research, but appropriate methodologies for doing this are not always clear. In this study we co-designed a way of involving people affected by a rare genomic disease in shaping future genomic research about the condition. The aim was to report the process, experiences and outcomes of involving people in genomic research in a standardised way, in order to inform future methods of involvement in research co-production. Method Participants were recruited from an online community hosted by an Australian-based rare disease charity and were over the age 18 years. Once people gave consent, we shared learning resources with participants and invited them to complete an online survey before joining a two-week facilitated online discussion, followed by a second online survey. We used ‘Standardised Data on Initiatives (STARDIT)’ to map preferences, plan involvement and report any outcomes from the process, with quantitative data analysed descriptively and qualitative data thematically analysed. Results Of the 26 people who gave consent and completed the initial survey, 15 participated in the online discussion and 12 completed the follow-up survey. STARDIT was used to report six outcomes from the process, including 60% of participants’ responses showing a change towards ‘widening’ their view of who should be involved in research to include more people. Outcomes also included an improved understanding of research and how to be involved. Participants enjoyed online discussions, found learning resources useful and asked to stay involved in the research process. The partner organisation reported that a similar online discussion will be used in future research prioritisation processes. Conclusion Involving people in co-designing the process improved the study design, ensuring it met the needs of participants. Whilst the study includes participants from only one disease group, using STARDIT allowed us to map people’s preferences and report the methods and outcomes from involving people, providing a way for learning from this case study to inform future research studies beyond the discipline of public health genomics.

scholarly journals Introduction of an online discussion forum and electronic communication practice in a tertiary-level Anaesthesia Department

2018 ◽  
Vol 7 (5) ◽  
pp. 24
Author(s):  
Brenton Sanderson ◽  
Jeremy Field
Keyword(s):  
Online Survey ◽  
Electronic Communication ◽  
Online Discussion ◽  
Discussion Forum ◽  
Hard Copy ◽  
Tertiary Level ◽  
Communication Medium ◽  
Online Discussion Forum ◽  
Significant Difference ◽  
Anaesthesia Department

Objective: Electronic communication mediums provide an opportunity for clinicians to enhance communication, collaboration, and sharing of clinical experience, especially via mobile devices. In 2016, the authors implemented a private online discussion forum in a tertiary-level anaesthesia department to improve communication and collaboration amongst members. The objective of this survey was to assess if these aims were met, to determine the degree of communication medium duplication incurred by its introduction, and to assess departmental communication practices more generally.Methods: A qualitative anonymous online survey was conducted 18 months following the introduction of the online discussion forum, over a two-month period. All 120 medical staff were invited via forum message and hard-copy invitation and responses were stratified by training status.Results: Forty-seven responses were collected (39% response rate), comprising 31 anaesthesia specialists and 16 anaesthesia trainees. Sixty-one percent of respondents reported that discussion had improved following the introduction of the online discussion forum, with no significant difference between specialists and trainees. Despite this, 57% overall maintained a preference for email discussion.Conclusions: This study demonstrated that the introduction of an online discussion forum resulted in a perceived improvement in overall departmental communication. However, it is important that workplaces considering implementation of a similar communication medium determine their employees’ cultural perspectives on technology, established communication preferences and aims of implementation to ensure success.

scholarly journals DON'T JUST SAY THANK YOU: EXPLORATION OF TYPES OF POSTS INSPIRING AND HINDERING DEEP CONVERSATIONS ONLINE

2019 ◽  
Vol 2019 ◽  
Author(s):  
Devayani Tirthali ◽  
Yumiko Murai
Keyword(s):  
Learning Community ◽  
Sequential Analysis ◽  
Online Discussion ◽  
Discussion Forum ◽  
Online Course ◽  
Online Discussion Forum ◽  
Personal Experiences ◽  
Fixed Structure ◽  
The Impact ◽  
The Given

In an open online discussion forum, where there is no fixed structure or a facilitator like a course forum without any assigned themes, every participant is a facilitator shaping the direction and depth of a conversation. How can we as designers then make sure it leads to an engaging learning community that learners keep coming back to beyond the given course period? This paper reports on sequential analysis of 172 posts in 32 threads and close reading of two threads from an open online discussion forum in a free open online course, specifically looking at the impact of participant actions as facilitative moves, to gain better understanding of the types of actions that lead to deeper and sustained engagement with the ideas of interest. Sequential analysis is an approach that estimates which types of sequences of posts or interactions are most likely to occur in a threaded discussion. The results showed that sharing personal experiences attracted most responses, implying that it is important to encourage participants to share questions or cases connected to their personal experiences. In addition, somewhat paradoxically, we found that posts acknowledging responses tend to conclude and close down the conversation while posts that ask diverging questions tend to attract more discussion.

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