The Rise of Citizen Science in Health and Biomedical Research

Wiggins, Andrea; Wilbanks, John

doi:10.1080/15265161.2019.1619859

Cited by 214 publications

(167 citation statements)

References 42 publications

(44 reference statements)

Supporting

Mentioning

166

Contrasting

Unclassified

Order By: Relevance

“…Health and biomedical citizen science is not readily defined as a separate practice or associated with a specific framework or schema, although the field is increasingly identified with a number of engagement models [21][22][23][24]. Projects involving human health and participants can be viewed as citizen science among various forms of community-based participatory research, action research, patient and public involvement (PPI), self-quantification, crowdsourced health research, among other practices [15,[23][24][25][26].…”

Section: Citizen Science Models Of Participatory Health Researchmentioning

confidence: 99%

“…in the home or the individual person), the greater the potential for legal, ethical, privacy, biosafety and data management and ownership complications to be raised [77,78]. It is, therefore, necessary to consider what shared standards, methodologies and practices might be applicable [2,79].…”

Section: Challenges and Limitationsmentioning

confidence: 99%

“…Global growth in participatory research approaches to address complex health challenges is being progressively supported by online platforms, tools and digital sensing devices. The mainstreaming of this form of public engagement is at the forefront of national research and health policy programmes [1,2].…”

Section: Introductionmentioning

confidence: 99%

See 2 more Smart Citations

Citizen Science Models in Health Research: an Australian Commentary

Borda

Gray

Downie

2019

OJPHI

View full text Add to dashboard Cite

This commentary explores how established citizen science models can inform and support meaningful engagement of the public in health research in Australia. In particular, with the growth in participatory health research approaches and increasing consumer participation in contributing to this research through digital technologies, there are gaps in our understanding of best practice in health and biomedical citizen science research to address these paradigm shifts. Notable gaps are how we might more clearly define the parameters of such research and which citizen science models might best support digitally-enabled participation falling within these. Further work in this area is expected to lead to how established citizen science methods may help improve the quality of and the translation of public engagement in health research.

show abstract

Section: Citizen Science Models Of Participatory Health Researchmentioning

confidence: 99%

Section: Challenges and Limitationsmentioning

confidence: 99%

See 1 more Smart Citation

Citizen Science Models in Health Research: an Australian Commentary

Borda

Gray

Downie

2019

OJPHI

View full text Add to dashboard Cite

show abstract

“…There are indeed a number of ongoing ethical and methodological debates on the nature of the Citizen Science practices in biomedical and public health research (e.g. (Ankeny and Barrie, 2019;Den Broeder et al, 2018;Evans, 2016;Fiske et al, 2019;Sherman et al, 2019;Wiggins and Wilbanks, 2019;Woolley et al, 2016) ) . These debates, however, shall not dismiss health-related participatory initiatives which have already taken a strong position in placing the citizen at the centre of the research process.…”

Section: Introductionmentioning

confidence: 99%

Reformulating computational social science with citizen social science: the case of a community-based mental health care research

Bonhoure¹,

Cigarini²,

Vicens³

et al. 2019

Preprint

View full text Add to dashboard Cite

“Citizen Social Science” is a fast-growing term within Citizen Science world but not many experiences have been shared in the literature to better shape its meaning. This article discusses novel possibilities of these participatory practices through the critical analysis of a concrete community-based project. We here embrace under the “Social” tag of Citizen Social Science both Computational Social Science methodologies and the Social concerns expressed by the mental health community. The interpretation place persons with a mental condition, as well as caregivers and relatives, at the center of the research cycle by taking the role of Competent Experts In-The-Field. A synergetic relation between Citizen Science, Mental Health research and Computational Social Science also imply a conceptual shift in comparison to standard approaches such as the inclusion of research subjects as active co-designers or the consideration of communitarian spaces as most natural experimental spaces. We here describe how these concepts are put into practice during the whole duration of a research project that has studied the social interactions inside the Community Mental Health Care ecosystem. Important steps entail the creation of a Knowledge Coalition, including a diversity of relevant actors with diverse knowledge and expertise, that is later involved in co-designing the research and in embedding experimental settings in communitarian spaces. The experience allows us to open a wider discussion on the possibilities and limitations of Citizen Social Science practices. Having in mind the ethical debate raised by Citizen Science Public Health and Patients’ driven research, we propose a set of values and practices to be agreed on. We also analyse the participation of the scientists in these kind of projects, which forces them to adopt the role of “camaleons” when executing diverse and versatile tasks. We additionally advocate for a more extended collective interpretation of the results in order to produce socially robust knowledge and enhance actions and policies grounded on these results. Exemplified with the experience herein presented, a more horizontal process that include the enhancement of participation and the revision of the notion of experiment offer new opportunities for Social Sciences from a multidisciplinary perspective.

show abstract

“…The target article by Wiggins and Wilbanks (2019) reports on the history and typology of the models of citizen science emerging in health and biomedical research with the rapid dispersion and repurposing of technology. Wiggins and Wilbanks describe the variety of models through which nonprofessionals collaborate in the generation of health and biomedical knowledge, and highlight the benefits of these citizen science models.…”

mentioning

confidence: 99%