Abstract
Objectives
Public engagement in cohort studies is instrumental to recruitment and retention. However, instead of framing engagement as a means to an end, we advocate for an end in itself approach that attempts to meaningfully share the shaping of the narrative of the cohort with its members.
Approach
Through an annual postal newsletter, we recruited five cohort members to lead the creation of a digital exhibition about the Aberdeen Children of the 1950s cohort. Our co-curators worked with us and a museum curator to design a narrative-driven overview of the cohort and its members’ lives. Additionally, we sent out a questionnaire (by email) asking cohort members about future research directions (n = 741) including a question: “Are there any other aspects of life during the pandemic that you think should be researched?”. Both activities aimed to contribute qualitative textual material to be drawn upon in this largely quantitative study.
Results
The digital exhibition was unexpectedly well received, becoming the most visited in the university’s collection. Co-curators emphasized the socio-historical embeddedness of the cohort, sharing experiences of growing up in times of Aberdeen’s booming oil economy. We garnered media attention in newspaper articles and interest from TV producers. Research enabled by the cohort featured in two documentaries, with two cohort members appearing in one.
The questionnaire yielded a response rate of 61%, with just under half providing answers to the open-ended question. Participants found mental health to be of the highest priority to research, contextualizing their rationales in free-text answers (27 mentions). Some of the most common themes included: comparisons with the typhoid epidemic in Aberdeen in the 1960s (9 mentions), and financial struggles (9 mentions).
Conclusion
Public engagement as an end-in-itself social practice is a powerful way to give agency to research participants. Qualitative contextual material can help researchers to ground their quantitative analyses in historical contexts housing populations which may be essential for interpretation and translation of findings to meaningful policies.
Public engagement in cohort studies is instrumental to recruitment and retention. However, instead of framing engagement as a means to an end, we advocate for an end in itself approach that attempts to meaningfully share the shaping of the narrative of the cohort with its members.
Approach
Through an annual postal newsletter, we recruited five cohort members to lead the creation of a digital exhibition about the Aberdeen Children of the 1950s cohort. Our co-curators worked with us and a museum curator to design a narrative-driven overview of the cohort and its members’ lives. Additionally, we sent out a questionnaire (by email) asking cohort members about future research directions (n = 741) including a question: “Are there any other aspects of life during the pandemic that you think should be researched?”. Both activities aimed to contribute qualitative textual material to be drawn upon in this largely quantitative study.
Results
The digital exhibition was unexpectedly well received, becoming the most visited in the university’s collection. Co-curators emphasized the socio-historical embeddedness of the cohort, sharing experiences of growing up in times of Aberdeen’s booming oil economy. We garnered media attention in newspaper articles and interest from TV producers. Research enabled by the cohort featured in two documentaries, with two cohort members appearing in one.
The questionnaire yielded a response rate of 61%, with just under half providing answers to the open-ended question. Participants found mental health to be of the highest priority to research, contextualizing their rationales in free-text answers (27 mentions). Some of the most common themes included: comparisons with the typhoid epidemic in Aberdeen in the 1960s (9 mentions), and financial struggles (9 mentions).
Conclusion
Public engagement as an end-in-itself social practice is a powerful way to give agency to research participants. Qualitative contextual material can help researchers to ground their quantitative analyses in historical contexts housing populations which may be essential for interpretation and translation of findings to meaningful policies.
| Original language | English |
|---|---|
| Title of host publication | International Journal of Population Data Science, 7(3) |
| Volume | 7 |
| Edition | 3 |
| DOIs | |
| Publication status | Published - 25 Aug 2022 |
| Event | International Population Data Linkage Network Conference - The Scholar Hotel, University of Edinburgh, Edinburgh , United Kingdom Duration: 7 Sept 2022 → 9 Sept 2022 Conference number: 2022 conference https://ipdln.org/2022-conference |
Conference
| Conference | International Population Data Linkage Network Conference |
|---|---|
| Abbreviated title | IPDLN2022 |
| Country/Territory | United Kingdom |
| City | Edinburgh |
| Period | 7/09/22 → 9/09/22 |
| Internet address |
Keywords
- public engagement
- longitudinal cohort studies
- participant involvement
- digital exhibition
- co-curation
Access to Document
- Adamczyk_etal_IJPDS_Give_and_Take_VOR
This work is licensed under a Creative Commons Attribution 4.0 International License.