Citizen Science in Health and Wellbeing Research in Australia: Public perceptions and future directions

Technical Summary: Public Perceptions and Future Directions for Citizen Science in Australian Health Research

Problem Statement
While Citizen Science (CS) has achieved significant success in ecological monitoring (e.g., biodiversity tracking), its application in health and wellbeing research remains underexplored and less impactful. Although public health research offers opportunities for crowdsourcing to extend the reach of monitoring and capture lived experiences, active participatory roles for community members are less common than passive data sharing. Furthermore, existing literature suggests that the formal terminology "Citizen Science" may alienate potential participants by implying exclusivity or a requirement for scientific qualifications. There is a lack of empirical data regarding the Australian public's specific attitudes, preferred terminologies, perceived costs and benefits, and topic interests regarding CS in the context of health and wellbeing.

Methodology
The study employed a mixed-methods approach to gather community input, approved by the CSIRO Low Risk Human Research Ethics committee. Three complementary data collection methods were utilized between February and December 2024:

1. Qualitative Market Research: Sixty-three participants (aged 18–35 and 36+) engaged in four online focus groups and two online discussion boards. These sessions explored baseline awareness of CS, perceptions of involvement, and topic interests. Participants were reimbursed for their time.
2. Online Survey: A quantitative survey was promoted via social media to the Australian public, particularly those engaged with science. Of 2,612 respondents who started, 1,110 completed the full survey. The instrument included open-ended questions on health interests, a ranking of 12 health topics, attitudinal scales regarding four different CS terminologies (Citizen Science, Participatory Science, Co-Design, Collaborative Science), and questions on motivators, barriers, and prior experience.
3. Anonymous Online Submissions: An open portal on the CSIRO website allowed for anonymous project idea submissions. While 71 individuals visited the submission page, only 21 submitted ideas, providing qualitative data on specific project concepts.

Data analysis involved grounded theory for qualitative sessions and thematic coding for open-ended survey responses and website submissions, utilizing SPSS for descriptive statistics.

Key Contributions and Results

• Awareness and Terminology: Qualitative research revealed low baseline awareness of the term "Citizen Science," which was frequently perceived as too formal, "stand-offish," or implying a need for scientific qualification. Once the concept was explained, participants recognized its potential. Survey data indicated that while 76% of respondents had heard the term, those unfamiliar with it preferred "Collaborative Science." Overall, terms like "community," "public," and "crowd-sourced" were rated as more accessible and engaging than "Citizen Science."
• Motivators and Barriers:
  • Motivators: The strongest drivers for participation were intrinsic, specifically "general interest in the topic" (Mean score 5.94/7) and "personal learning" (5.81/7). The desire to make a positive difference in the community and gain a sense of belonging were also significant.
  • Barriers: The primary deterrents were "not interested in the topic" (5.08/7) and "requires too much time" (5.02/7). Concerns regarding privacy and trust were also notable.
  • Incentives: Monetary payment was a weaker motivator (3.74/7) compared to educational benefits and health outcomes.
• Preferred Engagement Levels: Most participants expressed comfort with data collection activities (e.g., providing data). While there was interest in deeper collaboration (co-designing questions), the majority of survey respondents (43.3%) selected "Any of the above" regarding engagement levels, suggesting a lack of strong preference for a specific tier of involvement, though data provision remained the most immediate expectation.
• Topic Interests:
  • Qualitative & Survey: High interest was identified in environmental health (pollutants, nature), nutrition/diet, specific medical conditions (chronic disease, cancer, pain), mental health, and healthy ageing.
  • Survey Specifics: The most selected topic was the intersection of health, wellbeing, and behaviour (47.4%), followed by diet/food (34.3%), sleep (32.6%), and mood/mental health (32.6%).
  • Submissions: Anonymous submissions reinforced interests in environmental impacts, diet, and gender-specific health.

Significance and Claims
The paper claims that the Australian public is largely supportive of citizen science in health research but requires clear, inclusive language to overcome barriers of formality and perceived lack of qualification. The study highlights that successful engagement depends heavily on personal relevance; participants are more likely to engage with topics they perceive as directly affecting their lives or communities.

The authors assert that while the public is willing to provide data, achieving deeper, meaningful collaboration requires moving beyond simple data collection to include the public in co-design and interpretation, provided the topics are personally meaningful. The findings suggest that future health CS initiatives should:

1. Utilize accessible terminology (e.g., "community" or "collaborative" science) rather than "Citizen Science."
2. Focus on topics with high personal and community relevance, such as environmental health, nutrition, and mental wellbeing.
3. Design participation models that balance time commitments with educational and community benefits, rather than relying solely on financial incentives.

The study concludes that greater communication is needed to raise awareness that non-experts can contribute to research, noting that the lack of awareness itself is a primary barrier to participation. The authors position this work as a foundational step toward co-developing future health and wellbeing citizen science projects that are robust, relevant, and actionable.