Best practice guidelines for citizen science in mental health research: systematic review and evidence synthesis

Abstract

Partnering with people most affected by mental health problems can transform mental health outcomes. Citizen science as a research approach enables partnering with the public at a substantial scale, but there is scarce guidance on its use in mental health research. To develop best practise guidelines for conducting and reporting research, we conducted a systematic review of studies reporting mental health citizen science research. Documents were identified from electronic databases (n = 10), grey literature, conference proceedings, hand searching of specific journals and citation tracking. Document content was organised in NVIVO using the ten European Citizen Science Association (ECSA) citizen science principles. Best practise guidelines were developed by (a) identifying approaches specific to mental health research or where citizen science and mental health practises differ, (b) identifying relevant published reporting guidelines and methodologies already used in mental health research, and (c) identifying specific elements to include in reporting studies. A total of 14,063 documents were screened. Nine studies were included, from Australia, Belgium, Canada, Denmark, Netherlands, Spain, the UK, and the United States. Citizen scientists with lived experience of mental health problems were involved in data collection, analysis, project design, leadership, and dissemination of results. Most studies reported against some ECSA principles but reporting against these principles was often unclear and unstated. Best practise guidelines were developed, which identified mental health-specific issues relevant to citizen science, and reporting recommendations. These included citizen science as a mechanism for empowering people affected by mental health problems, attending to safeguarding issues such as health-related advice being shared between contributors, the use of existing health research reporting guidelines, evaluating the benefits for contributors and impact on researchers, explicit reporting of participation at each research stage, naming the citizen science platform and data repository, and clear reporting of consent processes, data ownership, and data sharing arrangements. We conclude that citizen science is feasible in mental health and can be complementary to other participatory approaches. It can contribute to active involvement, engagement, and knowledge production with the public. The proposed guidelines will support the quality of citizen science reporting.

Citizen Science Studies in Nursing: A Systematic Review

“…The oldest study included in this review is from 2017 [ 38 ]. These results are in line with other reviews [ 14 , 16 , 52 , 53 ], and coincide with the establishment of institutions such as the Australian Citizen Science Association in 2014 or the European Citizen Science Association in 2015 [ 54 ].…”

“…In our study, the samples are notably larger when individuals only participate in the data collection process. This is also the case with the findings of a similar review on mental health published by Todowede et al They report how in most cases participation was limited to this stage [52]. Derived from this, it is discussed in several articles that there is a directly proportional relationship, where greater participation is also associated with more benefits [52,62].…”

Applying Digital Technology to Understand Human Experiences of Climate Change Impacts on Food Security and Mental Health: Scoping Review

“…Despite advances in citizen science [79][80][81] and the application of digital technologies globally, no study to date has examined how or if digital tools are addressing the intersection of climate change, food security, and mental health. Thus, this scoping review aims to identify digital apps being used to capture and address human experiences of climate change on both food security and mental health to inform the development of a digital citizen science initiative.…”