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Online Workshop Day 1: Participant engagement in longitudinal population studies/cohorts
12 October 2021 @ 14:00 - 16:00
CET FreeThis webinar takes places over 2 days, for 2 hours each:
Day 1: October 12th, 2021. 14:00-16:00h (CEST)
Day 2: October 14th, 2021. 14:00-16:00h (CEST)
You are welcome to attend either or both sessions!
Description: Retaining several generations of participants in longitudinal cohorts and ensuring that the participants continuously contribute with new data and support data sharing, is challenging. Participants gradually drop out, do not respond to data collection requests, or simply lose interest in the study. Young people, disadvantaged socio-economic groups, and ethnic minorities are particularly difficult to retain for a long period of time.
Participant engagement aims to maintain the interest of participants in the study and encourage their participation and commitment over its lifetime. European cohorts are gradually developing participant engagement strategies including innovative tools for recruitment and informed consent collection, data collection and ongoing communication with, and involvement of, participants. At this digital workshop, the strategies of key European cohorts will be presented and discussed, and experiences exchanged. Work conducted to map participant engagement strategies in European cohorts will also be presented. The workshop is jointly organized by BBMRI-ERIC and Biobank Norway.
Agenda:
Day 1. October 12th, 2021. 14:00-16:00 CET.
| 14:00 | Welcome
Isabelle-Budin Ljøsne (Biobank Norway) Mónica Cano Abadía (BBMRI-ERIC) |
| 14:10 | Topic 1: Recruiting participants across several generations
Speaker: Lynn Molloy, ALSPAC, UK Short Q&A |
| 14:35 | Topic 2: Community Engagement / Coproduction and Citizen Science
Speaker: Aamnah Rahman, Research Fellow and Shahid Islam, Senior Research Fellow, Born in Bradford, UK Short Q&A |
| 15:00 | Topic 3: Recruiting and engaging participants in a web-based cohort
Speaker: Costanza Pizzi, NINFEA (Nascita e INFanzia: gli Effetti dell’Ambiente), Italy Short Q&A |
| 15:25 | Q&A + Exchange |
| 16:00 | Closure |
Day 2. October 14th, 2021. 14:00-16:00 CET.
| 14:00
|
Topic 4: Returning actionable research results to cohort participants
Speaker: Shona Kerr, VIKING GENES, UK Short Q&A |
| 14:25 | Topic 5: Engaging with cohorts of young participants
Speaker: Ana Cristina Santos, Geração 21, Portugal Short Q&A |
| 14:50 | Topic 6: Participant engagement in times of pandemic
Speaker: Robin Flaig, Clare Dolan and Rachel Edwards, Generation Scotland, UK Short Q&A |
| 15:15 | Mapping participant engagement in European cohorts
Speaker: Isabelle Budin-Ljøsne, Norwegian Institute of Public Health and Biobank Norway, Norway |
| 15:35 | Q&A + Exchange |
| 16:00 | Closure |
Websites of cohorts
ALSPAC: http://www.bristol.ac.uk/alspac/
Born in Bradford: https://borninbradford.nhs.uk/
NINFEA: https://www.progettoninfea.it/index_en
VIKING GENES: https://www.ed.ac.uk/viking
Geração 21: https://www.geracao21.com/en/
Generation Scotland: https://www.ed.ac.uk/generation-scotland
View the recordings for Day 1 and Day 2.
