presentation on citizen science given at the open life sciences cohort call

1. citizen science using
your own personal data
Bastian Greshake Tzovaras
@gedankenstuecke
2020-03-11

2. types of ‘citizen science’
• Crowdfunding
• Human Computation
• Crowdsourcing
Bonney et al. Can citizen science enhance public understanding of science? (2016)
Hecker et al. The European citizen science landscape – a snapshot (2019)

3. co-created community science
Bonney et al. Can citizen science enhance public understanding of science? (2016)
Hecker et al. The European citizen science landscape – a snapshot (2019)
0%
15%
30%
45%
60%
contributory collaborative co-created other

4. How to enable co-creation in
health/well-being citizen
science?

5. commons-based peer-production
open source movement Wikipedia
non-hierarchical
negotiated coordination
for-benefit
modular tasks
produsage
granular

6. Putting our personal data to use

7. Our Framework
Greshake Tzovaras et al. Open Humans: A platform for participant-centered research and
personal data exploration (2018)

8. individual imports
personal data,
Greshake Tzovaras et al. Open Humans: A platform for participant-centered research and
personal data exploration (2018)

9. individual imports
personal data,
Greshake Tzovaras et al. Open Humans: A platform for participant-centered research and
personal data exploration (2018)

10. Data Sources

11. individual imports
personal data,
stores data
privately & can
explore it,
Greshake Tzovaras et al. Open Humans: A platform for participant-centered research and
personal data exploration (2018)

13. Notebook-based analyses

14. Keating Memorial Self Research

15. privately explore
it & share
analyses
import personal
data
share data with
academic &
community-driven
projects
Greshake Tzovaras et al. Open Humans: A platform for participant-centered research and
personal data exploration (2018)

16. Projects using Data

17. Open Humans
the data is stored in
Open Humans,
individuals decide 3rd
party access
Donate reports for
Patient Advocacy
patient-led
experiments

18. Governance: Building trust &
community

19. Governance: Building trust &
community

20. Governance: Building trust &
community
Community-Elected
Board-Elected

21. tl;dr
• Open Humans allows participants to import their data and make per-
project decisions on how to share their data
• Data-using projects can be both, academic and/or patient-led
• Participants of Open Humans play an active role in the governance of the
ecosystem
• Check us out at https://www.openhumans.org and join our slack at http://
slackin.openhumans.org/