Table 1
Consensus on definitive characteristics of mental health citizen science.
| ITEM | ROUND | ALL | PARTICIPANTS BY ROLE | PARTICIPANTS BY LIVED EXPERIENCE | |||
|---|---|---|---|---|---|---|---|
| PROJECT LEADS | PUBLIC CONTRIBUTORS | OWN LIVED EXPERIENCE | SUPPORTED OTHERS | NO LIVED EXPERIENCE | |||
| A1: Project is directly about mental health | 1 | 4.0 (0.9) | 4.0 (0.9) | 3.9 (1.2) | 3.9 (1.0) | 4.3 (0.5) | 4.2 (1.0) |
| 2 | 4.1 (1.0) | 4.0 (1.0) | 5.0 (0.0) | 4.0 (1.1) | 4.5 (0.6) | 4.0 (1.4) | |
| A5: Public contributors are involved from the start in designing projects | 1 | 3.6 (1.1) | 3.4 (1.2) | 4.0 (0.8) | 3.3 (1.2) | 3.8 (1.2) | 4.2 (0.8) |
| 2 | 4.1 (1.0) | 4.0 (1.0) | 4.5 (0.7) | 4.1 (1.3) | 4.0 (0.0) | 4.0 (0.0) | |
| A12: Projects adhere to established scientific methods of doing research | 1 (consensus reached) | 4.1 (1.1) | 4.2 (1.0) | 4.0 (1.5) | 4.3 (1.0) | 3.7 (1.4) | 4.2 (1.0) |
| A14: Public contributors are acknowledged in publications | 2 (New question) | 4.0 (1.0) | 3.9 (1.0) | 4.5 (0.7) | 4.1 (0.9) | 3.5 (1.3) | 4.5 (0.7) |
| A15: Safeguarding procedures are in place for public contributors | 2 (New question) | 4.5 (0.6) | 4.6 (0.7) | 4.0 (0.0) | 4.2 (0.7) | 5.0 (0.0) | 5.0 (0.0) |
| A16: Support for emotional distress (occurring or made worse through participation) is available for public contributors | 2 (New question) | 4.1 (0.8) | 4.2 (0.9) | 4.0 (0.0) | 4.1 (0.8) | 3.8 (1.0) | 5.0 (0.0) |
| A17: Accessibility & inclusion needs of public contributors are addressed proactively | 2 (New question) | 4.4 (0.8) | 4.5 (0.5) | 4.0 (0.0) | 4.3 (0.5) | 4.5 (0.6) | 4.5 (0.7) |
[i] Note: Values presented are mean (standard deviation). 5 = essential, 4 = very important, 3 = somewhat important, 2 = a bit important, 1 = not important. Regular type = no consensus. Italics = moderate consensus (70%–79%). Bold = strong consensus (80% or more).
Table 2
Consensus on relevance of the European Citizen Science Association (ECSA) principles for mental health citizen science.
| ITEM | ROUND | ALL | PARTICIPANTS BY ROLE | PARTICIPANTS BY LIVED EXPERIENCE | |||
|---|---|---|---|---|---|---|---|
| PROJECT LEADS | PUBLIC CONTRIBUTORS | OWN LIVED EXPERIENCE | SUPPORTED OTHERS | NO LIVED EXPERIENCE | |||
| B1: Citizen science projects actively involve citizens in scientific endeavour that generates new knowledge or understanding. Citizens may act as contributors, collaborators, or project leaders & have a meaningful role | 1 (consensus reached) | 4.6 (0.7) | 4.7 (0.7) | 4.4 (0.8) | 4.5 (0.8) | 4.8 (0.4) | 5.0 (0.0) |
| B2: Citizen science projects have a genuine science outcome | 1 | 3.9 (1.0) | 4.0 (0.9) | 3.9 (1.2) | 3.8 (1.1) | 4.3 (0.8) | 4.0 (0.6) |
| 2 | 4.1 (0.6) | 4.1 (0.6) | 4.5 (0.7) | 4.1 (0.6) | 4.3 (0.5) | 4.0 (1.4) | |
| B3: Both professional scientists & citizen scientists benefit from taking part | 1 (consensus reached) | 4.5 (0.7) | 4.5 (0.8) | 4.3 (0.8) | 4.5 (0.6) | 4.2 (1.2) | 4.7 (0.8) |
| B4: Citizen scientists may participate in multiple stages of the scientific process | 1 (consensus reached) | 4.1 (0.7) | 4.1 (0.7) | 4.0 (0.6) | 3.9 (0.7) | 4.3 (0.5) | 4.5 (0.5) |
| B5: Citizen scientists receive feedback from the project | 1 (consensus reached) | 4.6 (0.6) | 4.6 (0.6) | 4.6 (0.8) | 4.5 (0.7) | 4.7 (0.5) | 5.0 (0.0) |
| B6: Citizen science is considered a research approach like any other, with limitations & biases that should be considered & controlled for | 1 (consensus reached) | 4.4 (0.8) | 4.3 (0.9) | 4.6 (0.5) | 4.3 (0.8) | 4.7 (0.5) | 4.2 (1.2) |
| B7: Citizen science project data/meta-data are made publicly available & where possible, results are published in an open access format | 1 (consensus reached) | 4.3 (0.8) | 4.3 (0.8) | 4.3 (0.8) | 4.3 (0.9) | 4.5 (0.5) | 4.2 (0.8) |
| B8: Citizen scientists are acknowledged in project results & publications | 1 (consensus reached) | 4.4 (0.8) | 4.4 (0.8) | 4.4 (0.8) | 4.3 (0.9) | 4.5 (0.8) | 5.0 (0.0) |
| B9: Citizen science programmes are evaluated for scientific output, data quality, participant experience & impact | 1 (consensus reached) | 4.4 (0.8) | 4.3 (0.9) | 4.4 (0.5) | 4.3 (0.9) | 4.7 (0.5) | 4.3 (0.8) |
| B10: Project leads take into consideration legal & ethical issues of any activities | 1 (consensus reached) | 4.6 (0.6) | 4.6 (0.6) | 4.6 (0.8) | 4.5 (0.7) | 4.7 (0.5) | 5.0 (0.0) |
[i] Note: Values presented are mean (standard deviation). 5 = essential, 4 = very important, 3 = somewhat important, 2 = a bit important, 1 = not important. Regular type = no consensus. Italics = moderate consensus (70%–79%). Bold = strong consensus (80% or more).
Table 3
Consensus on improving the quality of mental health citizen science (MHCS) projects.
| ITEM | ROUND | ALL | PROJECT LEADS | PUBLIC CONTRIBUTORS | OWN LIVED EXPERIENCE | SUPPORTED OTHERS | NO LIVED EXPERIENCE |
|---|---|---|---|---|---|---|---|
| D1: Public contributors & project leads work together to co-produce each stage of the research process | 1 | 3.8 (1.0) | 3.7 (1.0) | 4.3 (0.5) | 3.6 (1.1) | 3.8 (0.4) | 4.3 (0.5) |
| 2 | 4.2 (0.9) | 4.2 (0.9) | 4.5 (0.7) | 4.2 (1.1) | 4.0 (0.0) | 4.5 (0.7) | |
| D3: Digital platforms delivering projects feel safe & accessible for public contributors | 1 (consensus reached) | 4.1 (0.9) | 4.0 (1.0) | 4.4 (0.5) | 4.1 (1.1) | 4.2 (0.4) | 4.2 (0.8) |
| D4: Project leads are transparent, honest & competent in engaging with prospective public contributors | 1 (consensus reached) | 4.6 (0.6) | 4.7 (0.6) | 4.6 (0.5) | 4.6 (0.5) | 4.7 (0.8) | 4.6 (0.8) |
| D5: A clear definition of who can be a public contributor is provided | 1 (consensus reached) | 4.2 (0.9) | 4.1 (1.0) | 4.4 (0.5) | 4.3 (0.9) | 3.7 (1.0) | 4.3 (0.8) |
| D6: An inclusive definition of who can be a public contributor is provided | 1 (consensus reached) | 4.3 (0.8) | 4.2 (0.8) | 4.7 (0.4) | 4.4 (0.7) | 4.0 (1.1) | 4.3 (0.5) |
| D7: All project activities are described clearly | 1 (consensus reached) | 4.4 (0.9) | 4.3 (0.9) | 4.6 (0.8) | 4.3 (1.0) | 4.5 (0.5) | 4.3 (0.8) |
| D8: People using mental health services & people with lived experience NOT using services can be public contributors | 1 | 3.9 (1.1) | 3.9 (1.2) | 4.0 (0.6) | 3.7 (1.2) | 3.8 (0.4) | 4.7 (0.5) |
| 2 | 4.1 (1.1) | 4.1 (1.1) | 4.5 (0.7) | 4.0 (1.3) | 4.0 (0.0) | 5.0 (0.0) | |
| D9: People with significant experience of research in the same area cannot be public contributors | 1 | 1.7 (0.8) | 1.6 (0.6) | 2.3 (1.3) | 1.6 (0.9) | 1.8 (0.8) | 2.0 (0.6) |
| 2 | 1.3 (0.6) | 1.3 (0.6) | 1.5 (0.7) | 1.3 (0.7) | 1.3 (0.5) | 1.0 (0.0) | |
| D10: The aims and content of the planned project are described in an accessible manner to the public | 1 (consensus reached) | 4.8 (0.5) | 4.8 (0.4) | 4.6 (0.8) | 4.7 (0.6) | 4.8 (0.4) | 4.8 (0.4) |
[i] Note: Values presented are mean (standard deviation). 5 = essential, 4 = very important, 3 = somewhat important, 2 = a bit important, 1 = not important. Regular type = no consensus. Italics = moderate consensus (70%–79%). Bold = strong consensus (80% or more).
Table 4
Consensus on creating sustainable communities of mental health citizen science (MHCS) public contributors.
| ITEM | ROUND | ALL | PROJECT LEADS | PUBLIC CONTRIBUTORS | OWN LIVED EXPERIENCE | SUPPORTED OTHERS | NO LIVED EXPERIENCE |
|---|---|---|---|---|---|---|---|
| E4: A clear & desirable identity about being a public contributor | 1 | 4.0 (1.1) | 3.9 (1.2) | 4.3 (0.8) | 4.0 (1.0) | 3.7 (1.2) | 4.2 (1.6) |
| 2 | 4.1 (1.0) | 4.0 (1.1) | 4.5 (0.7) | 4.1 (1.1) | 3.8 (1.3) | 4.5 (0.7) | |
| E6: A catalogue of learning resources enabling public contributors to build knowledge & increase involvement | 1 | 3.7 (0.9) | 3.7 (0.9) | 4.0 (1.0) | 3.8 (1.1) | 3.5 (0.5) | 3.7 (0.5) |
| 2 | 3.9 (0.9) | 3.8 (0.9) | 4.5 (0.7) | 3.9 (1.2) | 4.0 (0.0) | 4.0 (0.0) | |
| E7: Involvement opportunities which increase in responsibility as public contributors develop their knowledge | 1 | 3.7 (0.9) | 3.7 (0.9) | 3.7 (1.0) | 3.8 (1.0) | 3.5 (0.5) | 3.8 (0.8) |
| 2 | 3.9 (0.9) | 3.8 (0.9) | 4.5 (0.7) | 4.1 (1.1) | 3.8 (0.5) | 3.5 (0.7) | |
| E8: Co-operation between individual projects to enable continuous engagement in MHCS research if desired | 1 | 3.7 (0.8) | 3.6 (0.7) | 4.3 (0.8) | 3.9 (0.8) | 3.5 (0.8) | 3.5 (0.5) |
| 2 | 4.2 (0.6) | 4.2 (0.6) | 4.5 (0.7) | 4.2 (0.7) | 4.0 (0.0) | 4.5 (0.7) | |
| E10: Opportunities to join social support networks with other public contributors | 1 | 3.6 (1.0) | 3.4 (1.0) | 4.3 (0.5) | 3.7 (1.0) | 3.7 (0.8) | 3.3 (1.0) |
| 2 | 3.9 (0.6) | 3.8 (0.6) | 4.5 (0.7) | 4.0 (0.7) | 3.8 (0.5) | 4.0 (0.0) |
[i] Note: Values presented are mean (standard deviation). 5 = essential, 4 = very important, 3 = somewhat important, 2 = a bit important, 1 = not important. Regular type = no consensus. Italics = moderate consensus (70%–79%). Bold = strong consensus (80% or more).
Figure 1
Important features for mental health citizen science (MHCS): an expert consensus.