Online Workshop Day 1: Participant engagement in longitudinal population studies/cohorts
2021-10-12 14:00 - 16:00 (Europe/Paris) | Online
This 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.

Online Workshop Day 2: Participant engagement in longitudinal population studies/cohorts
2021-10-14 14:00 - 16:00
This 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.

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.

EUCAN ELSI Webinar: International Data Sharing
2021-10-29 14:00 - 16:00
Join BBMRI-ERIC and other project partners from the EUCAN ELSI Collaboratory (EUCANCan, euCanSHare, CINECA, iReceptor Plus, EUCAN-Connect, ReCoD-ID, and EuCanImage) for a joint webinar about how fostering stakeholder engagement can improve transparency and accountability in international sharing of health data.
The first part will include four 15-minute presentations and conclude with a Q&A. The second part will be dedicated to horizon scanning, providing a space for researchers in the EUCAN ELSI projects to discuss a wide verity of themes concerning the future of international data sharing, including ongoing barriers to be remover; future research that needs to be conducted; and affirmation of certain already existing frameworks.
BBMRI-ERIC’s Michaela Th. Mayrhofer will give a talk entitled, “A focus on the S in ELSI: societal engagement and social aspects of data sharing”
All are welcome.
