A Scoping Review of Health‐Related Citizen Science Projects Involving Indigenous Peoples in Australia and Internationally

ABSTRACT

Issue Addressed

Citizen science, an approach to health promotion that involves public participation and collaboration, has been posited as a promising approach to reach diverse or marginalised populations. This scoping review aims to explore the involvement of Aboriginal and Torres Strait Islanders and other First Nations and Indigenous peoples internationally in citizen science in health‐related studies. While current health promotion in Indigenous communities is already strongly embedded in participatory approaches, we sought to examine whether citizen science methodologies have been used in health promotion and see what it could add.

Methods

We searched three databases for self‐identified citizen science studies on health‐related topics in the peer‐reviewed literature using the term ‘citizen science’ combined with search terms relevant to Aboriginal and Torres Strait Islanders and global Indigenous populations. We recorded data about project characteristics and the citizen science approach used and appraised the cultural engagement quality of studies included.

Results

Eleven articles were included for full‐text review. Included studies focused on a range of health‐related topics, including environmental issues, physical health, food security, and youth mental health. Six studies (55%) adopted a co‐created citizen science approach in which citizen scientists had input in key project phases and activities as collaborators and partners. The remaining studies took contributory (27%) or collaborative (9%) approaches, while no studies were citizen‐led. The cultural engagement quality of included citizen science projects was positive overall, although there were areas for improvement, specifically having clear Indigenous research leadership and governance, and transparent agreements on rights to cultural and intellectual property arising from the research.

Conclusion

Citizen science projects focusing on health‐related issues among Indigenous peoples and communities are relatively few. The potential of this approach to enrich current community‐based participatory or co‐design approaches to health promotion among Indigenous communities remains to be determined.

So What?

Future citizen science projects involving Indigenous people and communities should prioritise and support Indigenous‐led citizen science approaches where communities initiate, lead, and govern research processes. Cultural engagement quality could be improved, particularly in relation to having Indigenous‐led research governance, and rights of access to and protections of Indigenous intellectual and cultural property.

1. Introduction

There has been a growing interest in adopting citizen science within diverse situations and disciplines [1] including population health research [2]. According to the Australian Citizen Science Association [3] citizen science can be defined as “public participation and collaboration in scientific research with the aim to increase scientific knowledge”. Community‐based participatory research has been identified as a key principle in citizen science approach [3] and is widely applied in public health fields [4, 5].

The promising approach of citizen science, which involves public participation and collaboration, may yield an opportunity to improve community health [6]. Furthermore, a citizen science approach allows the researchers and citizen scientists to tailor studies aligned with the different needs of specific contexts, cultures, and practices [7]. Through citizen science, community voices can potentially inform and influence policies and decision‐makers [2]. Citizen science has the potential to include voices from Indigenous communities and aligns with the successful use of codesign with Aboriginal communities in New South Wales [8].

Citizen science may be considered through the degree of involvement of members of the public in the research process. Marks et al. [9] describe four models of citizen science characterised by increasing public involvement: contributory, collaborative, co‐created, and citizen‐led. In the contributory approach, citizen involvement is limited to data collection and/or analysis, while the collaborative approach offers more opportunities for citizens to contribute and collaborate with researchers at various stages of the research process. The greatest level of involvement characterises the co‐created and citizen‐led approaches whereby citizens also have control and leadership in project design, delivery, and translation. Co‐created citizen science projects are characterised by the citizens as partners throughout the process, while in citizen‐led approaches, members of the public lead the project from initiation to dissemination.

Co‐created citizen science has commonalities with community‐based participatory approaches, such as co‐design, used in health‐related research. Co‐design, preferencing Indigenous leadership, is regarded as the optimal approach to Indigenous community‐led projects and research, [10] and is commonly the model applied in Australia [11, 12] and internationally [13, 14]. Co‐design enables community voice, knowledge, and experience to lead every stage of a project or research from inception to dissemination and action on results [15]. Similarly, collective impact approaches bring together community and cultural knowledge holders with health and governance experts and have resulted in high‐impact, translational, and sustainable health outcomes [8]. These approaches require power and resource sharing and emphasise the collective rather than individuals or hierarchies, and align well with respectful engagement and decision‐making with communities.

Despite the overall increasing number of studies using the citizen science approach, there are disparities in participation, which may underrepresent certain demographic groups [16, 17, 18]. To the best of our knowledge, there are no reviews examining citizen science on health‐related topics involving Indigenous peoples. This scoping review aims to explore the involvement of Indigenous peoples in health‐related citizen science studies in Australia and internationally. We will examine the models of citizen science that have been used and identify factors that may contribute to Indigenous involvement in health‐related citizen science projects.

2. Methods

2.1. Positionality

This project arose from discussions initiated by the first author about citizen science as a possible approach to broaden the reach of health promotion and whether it might add value to current community‐based participatory approaches with Aboriginal and Torres Strait Islander people and communities. The project team comprises Indigenous JH, BR and non‐Indigenous researchers JYC, JDG, PNAD, CH, BL, JCS, KG, all of whom have been involved in different collaborations with Aboriginal and Torres Strait Islander, First Nations and other Indigenous peoples and communities. JH and BR advised on all steps of this project from review protocol development to results interpretation and write‐up.

JYC is a non‐Indigenous academic with 20 years' experience in health promotion research, practice and teaching. She lives on the land of the Wangal people and works on the land of the Wallumattagal clan of the Dharug Nation. JH is an Indigenous academic whose home community is based in Greater Western Sydney, the largest inter‐tribal, urban Aboriginal community in Australia. His family and community kinship connections are with the Gamilaraay and Wiradjuri First Nations of NSW. JDG is a non‐Indigenous woman of Irish settler origin who lives on the unceded lands of the Awabakal people and works at the University of Sydney on Gadigal land, “I have had the privilege of working with Australian Indigenouscommunities for more than 30 years.” PNAD is a non‐Indigenous research officer with background in Psychology and Public Health. She works on the Wallumattagal land of the Dharug Nation. CH is a non‐Aboriginal researcher, “I live on unceded Gadigal Country. I am a senior research fellow at the University of New South Wales and pleased to have the opportunity to work with Aboriginal and Torres Strait Islander people on Indigenous health research.” JCS is a non‐Indigenous researcher of English and Scottish origin, “I have had the great privilege of working with Aboriginal communities and leaders in Australia to improve public policy, models of health care and education for over 25 years. I live on the unceded lands of the Dharug people and have worked in both the government, NGO and university sectors.” KG is not indigenous. She lives on Gadigal Country and works on Bidjigal Country. (KG) has worked with and for Indigenous peoples for more than three decades. BR is a proud Bundjalung man from the north coast of NSW. He has worked in a range of positions in local, state and federal governments, and in the private and NGO sector for over 35 years, with the majority of these positions in Aboriginal affairs.

2.2. Search Strategies

Peer‐reviewed and grey literature were identified and included in the current review using PubMed, Scopus, and Google Scholar. We were interested in citizen science specifically.

Hence, we combined the term ‘citizen science’ with broader search terms and subject headings related to Aboriginal and Torres Strait Islanders and Indigenous people (Table 1) [28, 29]. Searches in each database and their results were recorded and are presented in Table S1. The scoping review protocol was registered and made publicly available via the Open Science Framework (https://osf.io/strxp).

TABLE 1.

Project characteristics of included studies (n = 11).

First author (year)	Geographic location	Topic	Duration	Geographic scope	Aims	Design
Bhawra (2021) [19]	Subarctic Métis jurisdiction of Île‐à‐la‐Crosse or Sakitawak (Cree name meaning “the place where the river flows out”), Saskatchewan, Canada	Citizen science approach for early detection and warning of climate impacts on food sovereignty, food security and solastalgia	Approx. 18 months	Regional	To develop and implement a sustainable digital platform that enables real time decision making to mitigate climate change related impacts on food systems and mental wellbeing	Mixed methods
Bouchet (2021) [20]	Northern coast between Roebuck Bay and Northern Territory border in Kimberley region of Western Australia, Australia	Understanding the abundance and habitat preferences of Australian Snubfin Dolphins to inform the development and implementation of conservation measures	17 years (2004–2020)	Regional	To present the first regional conservation assessment of Snubfin dolphins throughout northern western Australia.	Mixed methods, time series
Facchinelli (2022) [21]	Ecuadorian Amazon Region (EAR)	Mapping of gas flares in the Amazon rainforest through satellite imagery and local knowledge	Approx. 18 months (Jan 2019—May 2020)	Regional	To monitor gas flaring activities using citizen science and remote sensing and empower local communities to pursue legal action against oil companies	Community‐based participatory action research, mapping initiative
Hof (2017) [22]	Edgecombe Bay, within Gudjuda Reference Group Aboriginal Corporations' Sea Country in northern Great Barrier Reef, Queensland, Australia	Determining population trends, survivorship and growth rates of green sea turtles in northern Great Barrier Reef, Australia	12 years. (2003–2014)	Regional	To conduct population modelling of green turtle foraging in inshore waters of the Great Barrier Reef and north east Australia	Mixed methods, time series
Hoover (2016) [23]	Akwesasne, Mohawk community in USA sharing borders with New York, Ontario and Quebec.	Determining and monitoring contamination of environment with polychlorinated biphenyls (PCBs) and health impacts on community members with higher PCB levels.	1983 onwards	Local	To explore how the Mohawk community of Akwesasne worked with epidemiologists and community based participatory researchers to determine the health impacts of environmental contamination on their tribal members, the benefits and challenges of this research.	Qualitative study forming part of series of cross‐sectional observational studies involving community‐based participation
Kannan (2022) [24]	Rural and remote First Nations Reserves in Saskatchewan, Canada	Smart Indigenous Youth, community health trial to promote mental health, minimise substance use and prevent suicide in youth from rural and remote First Nations reserves	5 years (Smart Indigenous Youth) 6 months qualitative sub study	Regional	To identify strategies to promote mental health, minimise substance use and prevent suicide in Indigenous students impacted by Covid‐19; understand rapid decision making to preserve school health and how policies influenced health of educators and schools; and inform evidence based safe policies and practices	Qualitative study forming part of a larger five year mixed‐methods digital community health trial
Katapally (2019) [2]	Rural and remote First Nations Reserves in Saskatchewan, Canada	Smart Indigenous Youth, community health trial to promote mental health, minimise substance use and prevent suicide in youth from rural and remote First Nations reserves	Part of 5‐year Smart Indigenous Youth project	Regional	To embed a land based, culturally appropriate, active living digital health initiative into school curriculum and promote mental health in Indigenous youth; minimise substance abuse and prevent suicide among indigenous youth in rural and remote area of Saskatchewan; identify benefits, enablers/barriers to program implementation.	Policy analysis/process evaluation qualitative sub study
Kim (2020) [4]	Karuk communities in rural/remote northern California, USA	Health and food security priorities in a remote Native American community	Part of 5‐year community based participatory research collaboration with Karuk, Yurok, and Klamath Indian Tribes	Local	To empower Karuk youth and engage with them as leaders in research to address tribal food security, foster interest in research and develop skills that can be applied in their community.	Cross‐sectional observational study, community based participatory research integrated with citizen science
Phenrat (2020) [25]	Ban Chaung, Dawei District of Tanintharyi region, southern Myanmar	To develop risk management solutions for spontaneously combusting coal‐mine waste with Indigenous citizen scientists.	Used data collected from 2015 onwards when combustion started. This study conducted during 2019.	Local	To empower Indigenous Karen citizen scientists to participate in risk management decision‐making related to monitoring and managing spontaneous combustion of coal mine waste on their lands.	Observational mixed methods study using community based participatory research with citizen science
Vitos (2013) [26]	Northern Congo‐ Brazzaville	Use of Western technology and scientific methods to harness local knowledge of Mbendjele hunter‐gatherers in Congo rainforests and help to fight poaching.	1 year	Local	To co‐develop information and communication technology solutions with participating communities in order to enable them to capture their extensive environmental knowledge (and collect evidence of illegal poaching, corruption and native animal sightings) in ways that can be shared with outsiders and promote their control of their land and resources	Cross‐sectional observational study, community based participatory research
Webber (2021) [27]	Naabeehó Bináhásdzo, the Navajo Nation, USA	Investigating the use of sunflowers to reduce soil and groundwater contamination (phytoremediation) with Diné citizen scientists	2 years (2018–2019)	Local	To assess the effectiveness of sunflower seedlings for removing contaminants (uranium and arsenic) from soil and water; facilitate learning and cultivate collaboration with the Diné community using citizen science	Pre‐post design, project was designed using community collaboration, solution‐oriented science and environmental justice

2.3. Eligibility Criteria

Articles were included if they involved participants or the focus of the project involved Indigenous peoples or communities in Australia or internationally; reported on using a citizen science approach (must explicitly use the term “citizen science”); were published up to 30 June 2022; and were written in English. We excluded articles which did not include Indigenous peoples or communities as citizen scientists; the full text was not available; or were editorials, commentaries, dissertations, or conference abstracts.

2.4. Study Selection and Data Analysis

We imported search results from all database searches into Covidence. Duplicates were removed, followed by title and abstract screening by two independent reviewers (BL, MR). Next, full‐text articles were retrieved and independently screened by two reviewers (BL, MR) with any disagreements resolved through discussion with a third reviewer (JYC).

2.5. Data Extraction

We extracted the following information from included studies: author names; year of publication; geographic location of study (country); project topic; project duration; number of citizen scientists; characteristics of citizen scientists (e.g., First Nations, age, gender, education); geographic scope of study (local, regional, national, global); project aims; project design; project methods (citizen science activities); project results; citizen science approach; and stakeholder engagement (see quality appraisal).

2.6. Quality Appraisal

We assessed the methodological and cultural engagement quality of the included articles through iterative discussion. This process was guided by Indigenous research team members. In a virtual circle on Zoom, the research team discussed each included article and critically appraised the quality of their community and cultural engagement. We used the following tools for quality appraisal of community and cultural engagement:

2.7. Community Engagement Tool (CET) [28]

This tool consists of five items based on criteria from the Australian National Health and Medical Research Council guidelines for researcher and stakeholder conduct of ethical research with Aboriginal and Torres Strait Islander Peoples and communities [7]. Studies were rated on five criteria: (1) issue identified by community; (2) Indigenous governance; (3) capacity building; (4) cultural consideration in design; and (5) respecting community experience. Ratings on each criterion were summed to derive a total score denoting a study's level of cultural engagement: 0 to 1 = ‘weak’, 2 to 3 = ‘moderate’, 4 to 5 = ‘strong’.

2.8. Aboriginal and Torres Strait Islander Quality Appraisal Tool [30]

Developed by a team including senior Aboriginal and Torres Strait Islander health researchers, the QAT is designed for the critical appraisal of research reporting involving Australian settings with Aboriginal and Torres Strait Islander peoples, families, and communities, and can be used in conjunction with other critical appraisal tools. The QAT asks users to rate studies as “Yes”, “Partially, “No” or “Unclear” on 14 items:

1. Did the research respond to a need or priority determined by the community?

2. Was community consultation and engagement appropriately inclusive?

3. Did the research have Aboriginal and Torres Strait Islander research leadership?

4. Did the research have Aboriginal and Torres Strait Islander governance?

5. Were local community protocols respected and followed?

6. Did the researchers negotiate agreements in regard to rights of access to existing Aboriginal and Torres Strait Islander peoples' intellectual and cultural property?

7. Did the researchers negotiate agreements to protect the intellectual and cultural property of Aboriginal and Torres Strait Islander peoples created through the research?

8. Did Aboriginal and Torres Strait Islander peoples and communities have control over the collection and management of research materials?

9. Was the research guided by an Indigenous research paradigm?

10. Does the research take a strengths‐based approach, acknowledging and moving beyond practices that have harmed Aboriginal and Torres Strait peoples in the past?

11. Did the researchers plan and translate the findings into sustainable changes in policy and/or practice?

12. Did the research benefit the participants and Aboriginal and Torres Strait Islander communities?

13. Did the research demonstrate capacity strengthening for Aboriginal and Torres Strait Islander individuals?

14. Did everyone involved in the research have opportunities to learn from each other?

In this study, we modified our application of the QAT when appraising projects set in international Indigenous contexts. This involved interpreting transferable principles such as Indigenous leadership, governance, intellectual property, data ownership, capacity building, and adherence to cultural protocols [31].

3. Results

We followed the PRISMA‐ScR checklist for reporting the findings of this scoping review [32] (see Table S2). As shown in Figure 1, 669 studies were imported into Covidence (www.covidence.org) after removal of duplicates; 472 studies remained for title and abstract screening. Subsequently, 448 articles were excluded, leaving 24 articles for full text review. After full text review, 12 articles were removed one did not have the full text available, seven did not report using the citizen science approach or did not use the term “citizen science”, three did not involve Indigenous People or communities, and one paper was an editorial/commentary/thesis dissertation/conference paper. A final sample of 11 studies was included for review.

FIGURE 1.

Flow diagram of screening process.

Table 1 shows the project characteristics of included studies. All studies were conducted at the regional (n = 7) or local (n = 4) levels. Studies were also distributed around Australia (n = 2), North America (n = 3), South America (n = 4), Asia (n = 1), and Africa (n = 1). The project durations of the studies were mostly 1 to 5 years (n = 6), while three projects ran for greater than 10 years and two studies did not specify their duration. Most studies were published in the years 2020 and 2021 (n = 6). Project topics included physical health [4, 19], youth mental health [2, 24], food security [4, 19, 26], climate change [19], animal conservation [20, 22], and environmental contamination [21, 23, 25, 27].

All included studies involved citizen scientists from Indigenous communities (Table 2). Several studies involved specific community members including young people or high school students [2, 19, 27], youth leaders [4], school administrators or educators [24], and Indigenous rangers [20]. Using the [9] criteria, no studies included for review herein were categorised as citizen‐led, where the project was led by the community from inception to dissemination including controlling project design, delivery and translation. Six studies (55%) were considered co‐created [2, 4, 19, 23, 24, 27] whereby citizen scientists were collaborators and partners in the project with active input in key project phases and activities. One study was categorised as collaborative, in which the citizen scientists contributed their local knowledge, reviewed contaminated sites in the local community and chose remedies to implement based on recommendations provided by the researchers [25]. All other studies (27%) were deemed to take a contributary approach, where citizen scientist activities involved data collection and basic data analysis such as submitting images of animal species to conservation applications, participating in semi‐structured interviews and documenting observations [20, 21, 26].

TABLE 2.

Citizen science characteristics of included studies (n = 11).

First author (year)	Citizen scientists		Citizen science
	Sample size	Characteristics	Activities	Approach
Bhawra (2021) [19]	8 (4 youth, 2 Elders 2 decision‐makers)	Community members aged 13 years and older with access to smartphones; Citizen Science Advisory Council consisting of youth, Elders, Indigenous Knowledge Keepers, and decision makers of jurisdiction of Île‐à‐la‐Crosse.	5 phases involving participatory project planning, digital climate change platform customisation, community‐led evaluation, digital platform and project refinement, integrated knowledge translation	Co‐created
Bouchet (2021) [20]	Not stated	Indigenous Rangers associated with the Yawuru, Dambimangari, Wunambal Gaambera, Bardi Jawi, and Balanggarra Native Title groups	Daily collaborative surveys conducted by Indigenous Rangers on their respective Countries along with other surveys conducted by industry and scientists working in these waters; plus secondary data from incidental sightings as part of large scale aerial surveys targeting dugong and records crowdsourced from open access online biodiversity portals, and citizen science mobile applications (DolphinWatch, Coastal Walkabout)	Contributory
Facchinelli (2022) [21]	Not stated	2 local Indigenous communities; collaborators from local organisations UDAPT (Nueva Loja, Province of Sucumbíos) and the Fundación Alejandro Labaka, FAL (Puerto Francisco de Orellana, Province of Orellana)	Identification of gas flaring sites not visible by satellite and locating previously active sites no longer visible by satellite, complemented by analysis of existing gas flaring datasets	Contributory
Hof (2017) [22]	Not stated	Traditional Aboriginal owners of Land and Sea Country—Gudjuda Aboriginal Reference Group, near Bowen, and Girringun Aboriginal Corporation, near Cardwell, in northern Great Barrier Reef. Members of local indigenous and community groups, not‐for‐profit organisations, universities and government agencies contributed data.	Citizen scientists were trained in the techniques of capturing and tagging Sea turtles by at least 1 experienced researcher or collaborator. Sampled data were used in population modelling by researchers. Citizen scientists trained junior rangers and raised awareness about marine turtles and related research through education.	Collaborative
Hoover (2016) [23]	64 Akwesasne community members and 7 scientists who had been involved in the community health studies 1983–2003	Akwesasne community members, 32/64 (50%) had been involved in previous studies: 5 were fieldworkers, 6 were consulted as members of Akwesasne Task Force on the Environment, and 21 were study participants.	First project was initiated and led by community member and midwife to collect data on contamination of breast milk. Mohawk community advocated for residents to be trained and hired to work on project. Subsequent studies looked at health impacts (e.g., thyroid function, early menarche, diabetes, heart disease) in community members. In this paper, Hoover is commenting and interviewing the participants and contributes to the reporting back of research to the community.	Co‐created
Kannan (2022) [24]	25	3 school administrators, 22 educators.	Qualitative study involved key informant interviews and focus groups with educator and administrator citizen scientists. Larger trial was developed in with the communities, identified shared interests, based on relationship built over 3 years, built on respect, citizen and community ownership of research data and equity in research governance. Research trainees trained in Indigenous history, cultural safety, culturally appropriate research methods and ethics. Approach also tried to decolonise research methods and integrated Traditional Indigenous Knowledge to Two‐Eyed Seeing for participatory action research.	Co‐created
Katapally (2019) [2]	34 youth citizen scientists, from a cohort of 76 (2019 study pilot) from 2 schools in 2 rural reserves	Indigenous peoples in Saskatchewan—youth of First Nations, Inuit and Metis people school principals of schools of reserves	Stakeholder engagement to develop relationship and engage with community to develop initiative. Formative research with study piloting with 76 Indigenous youth citizen scientists that involved real time engagement with researchers via custom built smartphone app using smart phones during winter term. Youth Citizen Scientist Council formed, and members participated in focus groups and used app to provide end‐user insights, assist with integration and translation of knowledge, and contribute to evaluation of app's cultural appropriateness. 2 school principals became educator citizen scientists to provide insights about school policies and programs. Approach also featured decolonising of research methods and integrated Traditional Indigenous Knowledge to Two‐Eyed Seeing for participatory action research.	Co‐created
Kim (2020) [4]	12	Karuk Youth Leaders aged 13–18 years living in their community located in rural/remote northern California	Participated in youth research and leadership training activities; youth were consulted and co‐developed their research question and methods, youth co‐created and refined their survey instrument and procedures, guided data analysis and interpretation of analyses, generation of recommendations, and results presentation and dissemination.	Co‐created
Phenrat (2020) [25]	Not stated	Indigenous Karen community members of Ban Chaung, Dawei district of Tanintharyi region in southern Myanmar	Community citizen scientists consisting of volunteers from the affected community formed a local monitoring group that worked with a professional scientist to collaborate on project planning, implementation and results interpretation. Citizen scientists contributed information including names and locations of affected villagers, records of previous incidents and past environmental monitoring results, survey of health impacts, knowledge of hot spots, seasonal effects on combustion incidents and locations of affected agricultural land and surface water; and provided a channel to a responsible government agency through which they could voice their concerns and risk management decisions. They also ranked remedial options and participated in field investigations to identify ‘hot spots’, and made informed decision based on a set of options for fire suppression.	Collaborative
Vitos (2013) [26]	Not stated	The Mbendjele people (Mbendjele hunter‐gatherers)	Co‐developed a pictorial decision tree to document possible activity of poachers (when safe), take a photos, record video or audio on mobile phones. Hardware and mobile technology designed to be feasible for use by non‐literate Mbendjele end‐users and to withstand the rainforest conditions.	Contributory
Webber (2021) [27]	36 Diné high school students; other numbers not stated	Diné people (Navajo Nation), high school students, tribal elders	Project team consisted of Diné high school students, tribal elders, Bringham Young University undergraduate students, and researchers from within and outside the Navajo Nation. Diné school and supportive teachers collaborators were identified using social media platforms like LinkedIn and ResearchGate. Navajo Nation Environmental Protection Agency (NNPA) and local tribal chapter (Many Farms) were involved. Many Farms elders provided locations of wells for sampling and provided data and contextual information about history of uranium contamination of the Navajo Nation. High school students contributed to experiment design and hypothesis creation. Students trained on research methods and how to follow a protocol, for example, selected sample sites, collected water and soil samples, generated graphs and interpreted contamination data, planted and monitored plant growth.	Co‐created

3.1. Quality Appraisal of Cultural Engagement

Based on the CET, out of 11 articles, six (55%) were rated as ‘strong’ and five (45%) were rated as ‘moderate’on cultural engagement overall (Table 3). With respect to each CET criterion (see Table S3), 55% of studies reported the issue was identified by the community (Criterion 1); 55% of studies did not report having Indigenous governance (Criterion 2); 82% of studies reported on building capacity (Criterion 3); 73% of studies reported taking cultural considerations into account in the design (Criterion 4); and 91% of studies reported respecting community experience.

TABLE 3.

Quality of cultural engagement of included studies.

Study first author (year)	Cultural engagement tool (CET) (out of 5)			Aboriginal and torres strait islander quality appraisal tool (QAT) score (out of 14)
	Yes		Category	Yes		Partially		No		Unclear
	n	%		n	%	n	%	n	%	n	%
Bhawra (2021) [19]	4	80	Strong	13	93	1	7	0	0	0	0
Bouchet (2021) [20]	3	60	Moderate	4	29	3	21	4	29	3	21
Facchinelli (2022) [21]	3	60	Moderate	7	50	1	7	3	21	3	21
Hof (2017) [22]	3	60	Moderate	5	36	0	0	0	0	9	64
Hoover (2016) [23]	5	100	Strong	14	100	0	0	0	0	0	0
Kannan (2022) [24]	2	40	Moderate	10	71	1	7	3	21	0	0
Katapally (2019) [2]	4	80	Strong	10	71	3	21	0	0	1	7
Kim (2020) [4]	4	80	Strong	8	57	4	29	2	14	0	0
Phenrat (2020) [25]	4	80	Strong	6	43	2	14	3	21	3	21
Vitos (2013) [26]	4	80	Strong	3	21	5	36	3	21	3	21
Webber (2021) [27]	2	40	Moderate	2	14	4	29	6	43	2	14

Using the QAT, studies by [19, 23] had the most “yes” ratings across all QAT categories [23] scored 13/13 “yes” and [19] scored 12/13 “yes” and 1/13 “partial”. Fulfilment of individual criteria varied across studies (Table S4).

The majority of studies fully or partially reported that the project was responding to a need of priority determined by the community (QAT 1); showed appropriately inclusive community consultation and engagement (QAT 2); reported respecting and following local community protocols (QAT 5); reported that Aboriginal and Torres Strait Islander, First Nations or other Indigenous peoples and communities had control over the collection and management of research materials (QAT 8); reported on the translation of findings into sustainable changes in policy and/or practice (QAT 11); demonstrated capacity strengthening for Aboriginal and Torres Strait Islander, First Nations or other Indigenous individuals (QAT 13).

Nearly all studies fully or partially reported on using a strengths‐based approach, acknowledging and moving beyond the practices that have harmed Aboriginal and Torres Strait Islander, First Nations or other Indigenous peoples in the past (QAT 10), or showed that everyone involved in the research had opportunities to learn from each other (QAT 14), and all studies fully or partially reported that the research benefited the participants and Aboriginal and Torres Strait Islander, First Nations or other Indigenous communities (QAT 12).

There was mixed to little evidence of studies demonstrating evidence of Aboriginal or Torres Strait Islander, First Nations or other Indigenous research leadership (QAT 3) or governance (QAT 4); researchers negotiating agreements in regard to rights of access to existing Aboriginal and Torres Strait Islander, First Nations or other Indigenous people's intellectual and cultural property (QAT 6), or that the research was being guided by an Indigenous research paradigm (QAT 9).

Researchers varied in their reporting of negotiation of agreements to protect the intellectual and cultural property of Aboriginal and Torres Strait Islander, First Nations, or other Indigenous peoples created through the research (QAT 7).

4. Discussion

This scoping review found that there is a relative paucity of self‐identified citizen science projects focusing on health‐related issues involving Aboriginal and Torres Strait Islander, First Nations or other Indigenous peoples and communities in Australia or internationally. We identified a total of 11 health‐related Indigenous citizen science projects in the peer‐reviewed literature, two of which were based in Australia. These health‐related citizen science projects focused on a range of topics, including physical health, youth mental health, food security, climate change, animal conservation, and solutions to environmental contamination.

We found 6 out of 11 included studies (55%) could be considered as co‐created citizen science projects, but none were deemed to be citizen‐led, highlighting a need for deeper and more extensive engagement with Indigenous peoples and communities in the conduct of health‐related citizen science projects. The lack of citizen‐led projects found in this review suggests a missed opportunity to incorporate health promotion values of empowerment and self‐determination when working with Indigenous populations. It is possible that initiatives that could be considered citizen‐led or co‐created citizen science projects overlap with other health research involving participatory approaches like co‐design, but these studies would not have been captured if they did not self‐identify as citizen science. Nonetheless, the finding that more than half the included studies featured elements of co‐creation indicates a strength of the citizen science approaches taken in these health‐related projects.

Additionally, all remaining studies were categorised as collaborative or contributory in their citizen science approach and did not engage with or involve Indigenous communities more deeply, highlighting a practice gap that requires attention and improvement. Drawing more explicitly from participatory approaches, like co‐design, could enhance health‐related citizen science research and the development of programmes and initiatives customised to cultural contexts [33]. Co‐design approaches, particularly place‐based approaches that privilege local knowledge and leadership, ensure that local culture and context are central to the design, implementation and sustainability of the project. This includes defining the challenge/opportunity, setting the aims of the work, and agreeing on measures of success. Likewise, co‐design that includes power‐sharing and resource‐sharing promotes self‐determination and local leadership. This is critical because self‐determination and leadership are positively associated with good health for Indigenous people [34]. However, the studies included herein show the power imbalance that persists even in projects that self‐identified as combining community‐based participatory action with citizen science [21, 25]. For example, one project aimed to empower Indigenous Karen community members in Myanmar to manage the risks of spontaneous combustion of mine waste on their lands and advocate for their containment, but the Karen peoples' preferred choice of containment method and call for long‐term monitoring of impacted sites to be implemented were disregarded by the mining company and the community's concerns were subsequently passed to another government department [25].

Only one study out of 12 met all cultural engagement criteria on both appraisal tools [23] and one study met all but one of the cultural engagement criteria [19] indicating that there is room for improvement with respect to engaging with Indigenous peoples and communities in health‐related citizen science. Specifically, the quality of cultural engagement could be improved by researchers ensuring that projects have Aboriginal and Torres Strait Islander, First Nations, or other Indigenous research leadership and governance, as well as transparency in the negotiation of agreements related to access rights and protections of existing cultural and intellectual property of Indigenous peoples or communities and that created through the research. Furthermore, few studies (36%) explicitly stated that an Indigenous research paradigm underpinned the project being conducted. Improving research practice on these aspects would enhance the quality of cultural engagement of citizen science projects, increase Indigenous ownership and leadership of initiatives, and reduce barriers to broader engagement by Indigenous peoples and communities. Nonetheless, systemic barriers such as funding eligibility, lack of institutional support for Indigenous governance structures, and extractive academic models may impede the development of citizen‐led research. These barriers warrant explicit attention in future frameworks.

The main strength of this scoping review is the detailed quality appraisal of cultural engagement. While we found inconsistent quality in the cultural engagement of the included studies, it is not clear whether this was a result of inadequate detail in reporting or an indication of gaps in practice. For example, co‐author Hunter had background knowledge of one of the projects included for review [22] due to his prior experience working as an Aboriginal Land Management Facilitator in far north Queensland. This provided insights into the engagement processes and responsibilities the research team would have been obliged to undertake to establish the collaboration with Indigenous stakeholders, which were not reported in the peer‐reviewed article. The results of the cultural engagement quality appraisal in this scoping review indicate a need for better quality in the reporting of cultural engagement with Indigenous peoples and communities in health‐related citizen science projects. Future peer‐reviewed outputs should be encouraged to report in line with emerging Indigenous research standards to improve transparency and accountability. Journals can facilitate better quality in the reporting of cultural engagement by promoting appropriate guidelines or reporting tools, and by offering flexibility in manuscript word limits to accommodate more detailed descriptions of project leadership, governance, and community engagement.

Nonetheless, a limitation of this scoping review is the application of cultural engagement appraisal tools developed with Aboriginal and Torres Strait Islander peoples to Indigenous peoples from other parts of the world. The CET and QAT would only capture the commonalities in perspectives and priorities of Indigenous cultures in Australia and globally with Western‐trained researchers in terms of cultural engagement. Thus, cultural engagement perspectives and priorities unique to each Indigenous culture would not be taken into account. However, the CET and QAT are not tools for clinical assessment or diagnosis and may be suitable for assessing broad ideas around common aspects of cultural engagement across cultures including Indigenous and other linguistically diverse cultural groups.

Furthermore, although our protocol specified the inclusion of grey literature, we ultimately did not incorporate it due to time constraints and team capacity limitations. This deviation may have introduced potential biases due to the underrepresentation of Indigenous‐led research in peer‐reviewed journals and the exclusion of possibly relevant projects not published in “traditional” academic sources. Integrating grey literature into future investigations of this topic would provide a more nuanced and in‐depth understanding of the findings.

Finally, the term “citizen” may be contentious, particularly in contexts in which Indigenous sovereignty and nationhood are asserted. However, it was beyond the scope of this review to consider potential alternative names for this methodology. Future research should explore culturally appropriate and decolonised terminology for citizen science involving Aboriginal and Torres Strait Islander, First Nations and other Indigenous peoples.

5. Conclusion

Citizen science projects focusing on health‐related issues among Indigenous peoples and communities are relatively few. The potential for this approach to enrich current community‐based participatory or co‐design approaches to health promotion among Indigenous communities remains to be explored. We urge all citizen science projects involving Aboriginal and Torres Strait Islander, First Nations and other Indigenous peoples and communities from Australia and around the world to incorporate cultural engagement details in their reporting. This practice is crucial for fostering knowledge sharing and advancing non‐Western, decolonised research methodologies. By doing so, we can unlock the transformative potential of Indigenous‐led citizen science and related community‐based participatory approaches and promote a more inclusive and equitable scientific and health promotion landscape.

Conflicts of Interest

Josephine Y. Chau is President of the NSW‐ACT Branch of the Australian Health Promotion Association, which receives funding from the Australian Government. The other authors declare no conflicts of interest.

Supporting information

Data S1: hpja70086‐sup‐0001‐supinfo.docx.

Chau J. Y., Hunter J., Gwynn J. D., et al., “A Scoping Review of Health‐Related Citizen Science Projects Involving Indigenous Peoples in Australia and Internationally,” Health Promotion Journal of Australia 36, no. 4 (2025): e70086, 10.1002/hpja.70086.

Data Availability Statement

The data that supports the findings of this study are available in the Supporting Information of this article.