The Dignity Project

Abstract

The Dignity Project (DP) is a place where people with disability (PWD) can inform the design and delivery of services and system interfaces that improve health outcomes and equity, focusing on rehabilitation, healthcare and social-service provision. Our bespoke digital-engagement platform is guided by citizen science leaders (CSLs) with disability, who are embedded into our academic project team. We employ creative methods of digital storytelling to disrupt any barriers that prevent or limit PWD from participating in research and service design. We provide a safe, accessible and inclusive online space where citizen scientists with disability can share, reinterpret and analyse their collective health experiences to create more inclusive and equitable health outcomes.

Introduction

The DP was initiated in 2017 by Griffith University researchers, and has actively collaborated with partners, including the Metro South Health and Hospital Service, The Hopkins Centre, the Queenslanders with Disability Network and the Queensland Government, since 2019. Initially, the team undertook scoping work to design a CS framework and research program that embedded dignity into the process of doing research to improve health and wellbeing outcomes for PWD. Our partners have served as research funders and collaborators across over 25 campaigns and projects. The DP is driven and led by Griffith research fellow Kelsey Chapman, and members from all partner organizations regularly engage in our work.

Who should benefit?

The DP began in response to a decade of research, in partnership with PWD, revealing instances of undignified treatment and inequities in health systems that could be easily prevented if solutions were designed by people with lived experience. We aim to ensure that: future disability, rehabilitation and healthcare research addresses the topics of most concern to PWD; PWD are respectfully engaged in research beyond superficial forms of participation; research delivers meaningful outcomes and social change that promotes dignity; and long-term health and wellbeing outcomes are improved for the 40% of Australians living with chronic conditions, disability and impairment.

Using CS, the DP regards PWD as experts in their own life experiences. Academic researchers play a supportive role, providing methods, training and opportunities that can enable important challenges to be identified from lived experiences, and allowing solutions with real impact to be explored. CS conducted by PWD is a form of emancipation and enablement. Our approach is maximally inclusive with emancipatory goals: it goes beyond the notion of ‘amateurs’ assisting qualified researchers in data collection and analysis, and embeds citizens as integral drivers of all phases of research.

Griffith is a natural host for the DP, with its long-standing reputation as a civic social justice institution, built on a history of interdisciplinary solutions to complex challenges. For more than 30 years, Griffith has been respected as a leader in the disability and rehabilitation sector. The DP leverages the multi-level engagement infrastructure in place within the university to partner closely with other research centres. Our partners engage with us to address real-time clinical and social challenges for PWD, driven by teams of clinician‒researchers, researchers with disability and academics.

To date, the DP has funded grants with all partner organizations and is collaborating on a widespread program of work to improve the health and wellbeing of PWD.

Engagement

The DP is the only research project in Australia designed to address disability challenges, particularly in healthcare, using extreme CS. It’s innovative approach re-positions citizen scientists as drivers of knowledge creation; uses lived experiences of disability to design, perform and translate research; has developed and applied a framework for CS to conduct research in areas of priority for PWD; and provides an innovative digital space where solutions can be generated by and for PWD in partnership with academic researchers.

Although recognition of the importance of consumer and community engagement in research is growing—as is the popularity of methods like co-design—the DP is responding to the ongoing unmet health needs for PWD, as well as the long history of tokenism and inequitable participation in research. We prioritize diverse types of knowledge and different epistemological understandings of its origins, including lived experience. Extreme CS is highly salient to PWD, for whom research has typically been problematic. Historically, citizens from marginalized groups, like PWD, have been poorly represented in research, leading to inadequate health outcomes and solutions. Extreme CS can address this entrenched exclusion of PWD, particularly in health science. Empowering PWD to use their experiential knowledge to impact change can have positive outcomes for individuals, researchers and whole communities. Recognizing the dearth of frameworks through which CS can be inclusive and equitable for PWD, the DP created and trailed one. PWD identified the need to define dignity and develop a model through which human rights can be protected, maintained and enhanced within healthcare and other mainstream systems in order to result in equitable, quality health outcomes.

Research

The DP harnesses innovative digital-engagement techniques and methods (including geographic information system mapping and video) to facilitate accessible and inclusive opportunities for engaging PWD in research and CS. The project uses recognized and well-tested participatory research methods that promote critical dialogue to bring about change by developing civic engagement among marginalized populations. Disability is not homogenous, even among citizens with the same diagnosis, so safeguarding dignified, authentic and transparent CS must be based on accessibility and inclusion, and responsive to diversity and intersectionality. Barriers to inclusion in CS are particularly problematic for PWD, who experience higher levels of economic inequality, lack of appropriate transportation, time constraints and unfamiliarity with scientific methods. Digital engagement can overcome many of these barriers, but inclusion and accessibility require further commitment to atypical and flexible working patterns, and to ensuring that online environments and data collection mechanisms can be accessed and understood by citizens with diverse impairments.

The DP’s online platform (The Inclusive Futures Hub), co-designed in collaboration with PWD, aims to contribute to a valid database of ideas and develop a population of active citizen scientists who are confident to share and engage with evidence; to link citizen scientists with researchers to provide capacity building and training; and to enable citizen scientists with disability to participate fully in digital storytelling and forums.

Following a successful pilot from 2020 to 2022, the DP has improved its digital infrastructure and engagement capabilities to extend the capacity of the platform to be Web Content Accessibility Guidelines 2.1 (WCAG2.1) compliant. It is successfully used by a range of people including those with physical, sensory, psychosocial, cognitive and intellectual disabilities. We also engage meaningfully with our partner organizations to ensure that the research conducted using CS methods is implementable and translatable to health, government and other mainstream service system contexts.

Translating into impact

So far, the DP has improved knowledge about the experiences of PWD in navigating rehabilitation and health service systems; increased understanding of the challenges associated with engaging in rehabilitation, sustaining social networks and participating in society; and raised awareness of the utility and benefit of engaging end-users in service planning, design, delivery and implementation.

The DP has utilized academic and commercial research grants, valued at more than AUS$1.4 million, to understand what dignity means for PWD and how to ensure dignified experiences and outcomes in their interactions with mainstream systems and services, particularly in healthcare contexts. This knowledge creation has led to the development of a model for dignity. Key recommendations for action by policymakers, service providers and system decision-makers are to recognize the right of PWD to make informed decisions about their lives and care; improve system navigation and informed decision-making with complete, accessible and inclusive information; eliminate or minimize access barriers using co-design and universal design; improve training and support for frontline clinical staff to provide respectful, disability-aware interactions; and create spaces to support the expression of voice, choice and independence of PWD.

Our citizen scientists and academic partners have published peer-reviewed articles in top-quartile journals and The Conversation, and reached the finals of the 2022 Eureka Prize for Innovation in Citizen Science. Our ‘CS Research 101’ micro-credential and digital badge training launched in June 2023 offers certification for platform members with lived experience. Many of our citizen scientists are now employed as research assistants and research partners across initiatives at Griffith, the Summer Foundation and Queensland Health. Results of DP research are being embedded in policy and practice across Queensland Government departments in accessibility and inclusion action plans and strategies, enhancing dignified care for PWD