Figure 1
The demographic profile of respondents to the survey: (a) age distribution, (b) gender distribution, (c) education distribution, and (d) geographic profile.
Figure 2
(a) Self-identifications chosen by respondents. The left-hand bars show the total number of responses per category, the right-hand bars show overlapping responses and frequency as respondents could select multiple categories. (b,c) The breakdown of respondents by self-identification and whether they had prior experience with citizen science generally (b), and health-related citizen science specifically (c). CS4H: Citizen Science for Health.
Figure 3
Classification of the CS4H projects that survey respondents are or have been involved in. CS4H: Citizen Science for Health.
Figure 4
Perceived differences between health-related citizen science and other forms of citizen science. Results are grouped by whether respondents had prior involvement with (health-related) citizen science or not (groups C and D are subsets of group B).
Table 1
An overview of 13 conditions for the growth of health-related citizen science that respondents were asked about. Survey participants responded to the conditions exactly as worded in this table. The “short title” is introduced in this paper for convenience.
| SHORT TITLE | CONDITION |
|---|---|
| ROI | Balanced “return on investment” – both researcher and citizen/patient must be satisfied with participating in the project |
| Ethics | Adequate ethical frameworks and review procedures |
| Data Infrastructure | Data infrastructure to appropriately connect data of different sources (e.g., Real World Data, clinical data, etc.), including issues such as data quality, ownership, security, interoperability |
| Dissemination | Publication and dissemination of research and results |
| Tooling | Provision and development of tools for citizens to conduct research (apps, ehealth devices, adequate research procedures, etc.) |
| Citizen Visibility | Make the existing diversity of citizen science practices visible (unlocking the potential of citizens) |
| Lobby | Communication and lobby channels vis-a-vis policy makers |
| Learning Infrastructure | Development of a multi-stakeholder co-creative learning infrastructure |
| Education | Familiarity with or understanding of (medical) professionals about citizen science |
| Health Records | Access of citizens to their health records |
| Legal Frameworks | Legislative frameworks (e.g,. regarding eHealth tools, involvement of industry) |
| Literature | Access to health literature for citizens |
| Labs | Access to lab facilities for citizen/patients |
Figure 5
Respondents’ views on the importance of 13 conditions to further grow health-related citizen science, from -2 (not important at all) to +2 (very important). Bars give the absolute number of responses, and vertical lines give average scores.