Dignity Project Academic Research Lead
Dignity Project: inclusivity and citizen science in health science research
The Dignity Project, a citizen science research and engagement initiative at Griffith University, empowers people with disability by involving them in all stages of research as experts of their lived experience. With a focus on extreme citizen science, the project promotes inclusion and participation, addressing challenges faced by the disability community in healthcare, public transport, and social services. The digital engagement platform has 300+ members, 70% of which are women citizen scientists with disability, and enables citizens to share their experiences and contribute to service design innovations. The project has established ethical guidelines for research involving people with disability, ensuring transparency, accountability and accessibility. It has received $1 million in funding and completed over 20 discrete projects in partnership with other organisations, since its conception in late 2019. The team, including 4 women citizen scientists with disability, were selected as Eureka Prize finalists for Innovation in Citizen Science in 2022.
The Dignity Project is a ground-breaking initiative that has significant benefits for people with disability, the disability community, and various key stakeholders including STEM researchers. There are wide-ranging benefits, including creating new scientific knowledge at the intersection of dignity, disability and system interaction; promoting meaningful and sustainable impact for citizen scientists and the disability community; and driving systems level improvements. The project has created a ripple effect of positive change, leading to more dignified experiences.
Research benefits include improved knowledge about the experiences of people with disability in navigating mainstream systems and services (transport, healthcare, employment). The project has developed a novel framework for citizen science with people with disability, piloted the process and iterated to offer scientists a mechanism for improved recruitment, retention and engagement with a hard-to-reach community. The digital platform provides user-tested, evidence-based, inclusive solutions for engaging with the disability community in research, beyond traditional forms of research. The project has reduced waste of resources on poorly designed initiatives and improved the quality of engagement with end-users with disability through a legitimate mechanism.
System- level improvements and impact have been achieved through the adoption of the Dignity Project’s research findings by various organisations, including the Gold Coast Health and Hospital Service, and various Queensland Government Departments. The Department of Transport and Main Roads recently embedded research findings into their Accessibility and Inclusion Action Plan. Findings have been disseminated at conferences, workshops, and through media outlets, further raising awareness and promoting inclusive research practice.
Benefits for citizen scientists and the community have been considerable. Citizen scientists (n=300+) have had the opportunity to increase their capacity and knowledge of research. The Dignity Project has developed a micro-credential and digital-badge, co-designed with people with disability, to build capacity for people with disability to lead research projects. This contributes to the professionalisation of lived experience in research, pathways for non-traditional STEM careers, and employment opportunities.
Individual impacts have been profound, with 5 citizen scientists going on to find meaningful employment within research through Griffith University and our partners. Their work has contributed to sustainable and tangible services that continue to benefit others with disability.
As a non-traditional STEM researcher, I am passionate about serving as a role model for women and young girls by demonstrating that STEM can encompass a novel, human-centred approach to science research that empowers individuals from diverse backgrounds to contribute meaningfully to the field.
My commitment to inclusion is evident in my work leading the Dignity Project, where I’ve collaborated with over 300 citizen scientists, 70% of whom are women with disability. Our inclusive and collaborative approach breaks down barriers and challenges traditional notions of who can participate in and contribute to scientific endeavours.
I have also focused on developing pathways to engage women with disability in non-traditional forms of education. I was part of a team that co-designed a micro-credential and digital badge program empowering participants with research knowledge. The course, going live in April 2023, not only fosters professional development and engagement in science, but also demonstrates to young girls and women with disability that there is no single right way to enter and excel in STEM fields.
As a leader, my style is centred around collaboration and inclusivity, encouraging diverse perspectives and driving innovation in research. As a mother of a young daughter, I strive to model empathy and a human-centred approach to problem-solving, inspiring young girls to envision themselves in STEM roles.
I prioritise the dissemination of the Dignity Project research findings through non-academic methods, such as digital open access platforms and media appearances, which makes our research more accessible to people with disability but also serves as a reminder that STEM can be engaging and relevant to a wider audience. I’ve co-authored two Conversation articles and five academic peer-reviewed publications with female citizen scientists with disability. I also served on the Diversity and Inclusion Committee for the Social Enterprise World Forum and the Disability Committee at Metro South Health, showing my commitment to inclusion and dignity outside of paid work engagements.
My work on the Dignity Project showcases my commitment to improving the lives of people with disability through research. By focusing on human dignity and the experiences of individuals, I exemplify how STEM research can be both compassionate and ground-breaking. By involving women with disability in the research process, fostering professional development through innovative educational pathways and employment opportunities, and demonstrating the impact of empathy-driven scientific research, I hope to continue to inspire the next generation of female STEM leaders to think creatively and challenge the status quo.
The Dignity Project, an initiative led by citizen scientists with disability and scientists with and without disability, offers valuable opportunities to promote STEM engagement and foster a sense of inclusion among scientific and non-scientific audiences, particularly for women with disability. Collaborative engagement is central to the Dignity Project’s success, as evidenced by its partnership with the Queenslanders with Disability Network. This partnership allows the project to expand its impact and reach a larger group of citizen scientists.
By prioritising plain-language communication, the project ensures that recruitment, citizen science participation, and data collection methods are accessible and inclusive. The Dignity Project’s approach involves citizens getting research experiences, as they engage with their communities, collecting and analysing data through challenge-driven research events and workshops, both in-person and online. The project has hosted a series of these events in 2021, 2022, and ongoing in 2023, encouraging participations to tackle rea-world problems impacting people with disability. We also developed short, accessible videos on YouTube to educate and promote citizen science research and the project initiatives as a whole. These multi-media resources further engage audiences and facilitate a deeper understanding of the project’s objectives and impact.
Mentorship and role models are vital components of the project, with lead citizen scientists with disability inspiring other individuals with disability to actively participate and engage in research. The Dignity Project has published over 40 blogs and digital content features, with stories and life hacks from citizen scientists with disability, promoting community-led discussions and engagement in science. These online conversations contribute to the growing list of projects that the research team tackles with citizen scientists to address the priorities that matter most to the community.
As the Dignity Project research lead, I have presented at more than 15 workshops for science and non-science audiences in the past three years, including the National Disability Summit, the Planetree Conference for person-centred healthcare, the SRI Conference, and the Metro South Health Allied Health “Involving Consumers in Research” conference twice. I’ve hosted a number of capacity-building workshops and trainings specifically for our lead citizen scientists to develop knowledge and skills related to project management and research.
The Dignity Project demonstrates a commitment to inclusivity, accessibility and active engagement for people with disability in various STEM promotion activities. By hosting challenge- driven research events and workshops, publishing blogs and digital content, presenting at conferences and workshops, and creating accessible educational material, the project effectively reaches both scientific and non-scientific audiences, fostering innovation and social change.