Citizen Science Models in Health Research: an Australian Commentary

Abstract

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.

The Rise of Digital Citizenship and the Participatory Museum

“…In tandem with grass-roots media, open data and ubiquitous technologies, citizen-led participation has also signalled a significant shift in the ways collecting, disseminating, and sharing of information are undertaken by digital citizens (Pepi 2014). Crowdsourced heritage and citizen science approaches have flourished in these environments in which the public have contributed to curatorial tasks, such as labelling, text annotation, and gathering new observational data around their local environments (Ridge 2014; Borda et al 2019;. The Smithsonian Open Access portal (Smithsonian n.d.) is an example of an initiative that provides a trusted and freely accessible resource supporting digital citizen enquiry and self-directed learning.…”

“…This paper follows on from a study about public participation in research in museums and cultural organisations . A focus of the study was the application of citizen science approaches, particularly using crowdsourcing and other participatory practices (Borda et al 2019). We extend this research to explore further the role of digital citizenship in the cultural sector.…”

“…Digitally literate citizens are more often able to engage on the Internet as part of one or more online communities, such as citizen scientists tackling data collection and/or open data related activities through collective and individual efforts (Borda et al 2019;. A critical aspect of such digital citizenship practice is the continuous development of norms of appropriate, responsible, and empowered technology use.…”

Turing's Sunflowers: Public research and the role of museums

“…Scientific institutions such as the Royal Society have significantly improved their web presence over the years (Bowen and Borda 2009). Scientists have also realised the potential of the web to using the public in aid their research in what has become to be known as "citizen science" (Wikipedia 2020;Borda, Gray and Downie 2019) that is, active participation in research teams by members of the general public with no formal training in the field of research concerned (Irwin 1995).…”

Crowdsourcing snake identification with online communities of professional herpetologists and avocational snake enthusiasts

“…CrowdMed, HealthTap) and patients (e.g. PatientsLikeMe) in the diagnosis of complex health conditions is growing [ 52 , 53 ]. Crowdsourcing may be especially helpful in the context of snakebite, where the number of trained health professionals is limited and affected populations are severely neglected.…”