Authors: PhD Researchers Matthew McKenna, Joan Alaboson, and Grevet Moyo, (Maynooth University); Vivienne Howard (Trinity College Dublin); and Shannon Aisling Forde (Munster Technological University). Supported by Science Foundation of Ireland’s (SFI) Centre for Research and Training in Advanced Networks for Sustainable Societies (ADVANCE CRT)
The Assisting Living and Learning (ALL) Institute and the Ideas in ALL Blog exist to ensure that marginalised voices are heard and recognised by promoting human rights-based, person-centred research and advocating for technologies that empower individuals and foster inclusivity. Our project, Unheard, grew directly out of this mission, to explore what happens when those voices are overlooked in the digitalisation of health and care, and how the arts can help bring them back into focus. By working with poetry, we found a way to bring those voices back to the centre, reminding us that digital innovation must always serve human dignity and inclusion.
All too often in the process of digitalisation, users of digital health technologies can find themselves being overlooked and forgotten in the design and implementation of devices and services, effectively denying them the opportunity to express what their own personal needs and preferences are. Similarly, the voices of service users and carers are frequently forgotten in modern digital health system integration practices. In this vein, there is often a lack of sufficient user-led person-centred feedback and consultation procedures, to listen to, and gather or capture, the requirements of patients and caregivers.
Frustrated by this reality, and seeking to find a novel way of casting a spotlight on this issue, five PhD researchers from the Science Foundation of Ireland’s (SFI) Centre for Research and Training in Advanced Networks for Sustainable Societies (ADVANCE CRT), based in Trinity College Dublin, Maynooth University and Munster Technological University, developed an arts-based research project that was designed to give a voice to marginalised users of digital health technologies and listen to their frustrations, fears, struggles, and hopes. Thus, by drawing on five PhD research topics on multiple sclerosis, type 1 diabetes, serious mental illness, visual impairment and ageing with digital technologies, the ‘Unheard’ researcher-led project was created. By bringing the voices of marginalised and vulnerable people to life, Unheard echoes the mission of the ALL Institute as it pushes back against the risks of digitalisation leaving people invisible, ensuring that technology serves inclusion rather than exclusion.
After considering various arts-based mediums, we decided that ‘spoken word poetry’ was the most appropriate art form for delivering the expression and impact that we were looking for as it can connect emotion to meaning through a unique blend of narrative rhythm and performance. With invaluable support from ADVANCE’s Operations Team, we secured funding to recruit a spoken word artist. We were also given funding to hire an appropriate venue in a theatre setting, as well as a videographer who could film the recital of the piece and carry out the necessary post-production edits where required.
We commissioned spoken word poet, Cormac Fitzgerald, to take our anonymised data which included fragments of lived experience, quotes and stories, and weave them into a single performance. Over the course of several weeks, he met with us individually, asked questions about our work, and delved into what we had heard in our respective fields. Afterwards, he crafted a powerful poem that brought together those fragments into a unified voice.
The characters he created were not direct participants, but composites drawn from the research:
From research on multiple sclerosis came stories of fatigue and the strain of caregiving, which became Maria and her partner Darragh. From studies on type 1 diabetes came the nightly routines of parents and children, shaping Aisling and her son John. From work on serious mental illness and physical activity emerged Wojtek, grappling with stigma while trying to make sense of assistive technologies. Research into visual impairment fed into Aisha’s story of navigating a world not always designed with her needs in mind. And from studies on ageing with technology came reflections on autonomy, independence, and the frustrations of tools that promise support but often fall short. Their voices are fictional but echo real lives and carry truths that resonate across health and social care.
We filmed the piece in a theatre setting, stripped back to its essentials; one spotlight, one performer, and one voice. The result was Unheard, a nine-minute performance of words heavy with meaning and alive with resonance. When we shared it at the Healthcare Systems Ergonomics and Patient Safety (HEPS) 2025 Conference, the reaction was striking. Delegates from health services, education, and policy expressed how they were deeply moved, challenged, and inspired. Medical educators are now exploring how to integrate the video into training. Caregivers and patients told us they felt recognised and genuinely ‘heard’, and that for once, their struggles had been validated by giving a voice to experiences they had only ever seen flattened in data tables and text. Others commented that the energy and impact of the spoken-word performance achieved a level of engagement and enthusiasm rarely generated by research papers alone. Across caregivers, educators, and policymakers, the feedback was clear: the combination of poetry and performance made the research resonate in ways that conventional dissemination could not.
We also circulated it through our professional networks and were greatly assisted in this process by the ‘Spotlight on Research’ blog page of the Maynooth University Research and Development Office which significantly boosted the online profile of the project by increasing its visibility within the university and to its partner organisations and affiliated researchers. In addition, it was received with great interest in other Irish universities, as well as the Health Service Executive and the National Disability Authority, and by individuals and organisations abroad including a medical school based in the US.
For us, this confirmed that the arts can do something research papers alone often cannot. They can make hidden experiences visible, not by reducing them to categories but by giving them shape and texture. They can engage audiences across disciplines and communities, sparking empathy and reflection. In short, they can help us listen differently. This matters deeply for the ALL Institute. ALL is not only about producing knowledge; it is about ensuring that knowledge leads to inclusion, equity, and participation. By embracing interdisciplinary collaboration, whether with technologists, policymakers, or in this case, artists, we move closer to research that is accessible and transformative. Unheard is an example of how academic rigour and creative expression can come together to make research more human, more resonant, and more impactful.
Of course, there were challenges. Working across disciplines meant entering unfamiliar territory; commissioning an artist, ensuring ethical safeguards, and making creative decisions together. At times we had to relinquish control, to let the artist interpret the data through his own creative lens. But this letting go became a lesson in listening itself. It reminded us that listening is not passive. It requires humility, openness, and a willingness to be changed by what we hear.
The result exceeded our expectations. What began as a small collaboration has become a resource now sought for education, training, and advocacy. It has sparked dialogue, provoked reflection, and reminded us that research is not just about producing knowledge, but about communicating it in ways that matter. In many ways, Unheard is an extension of ALL’s mission. It demonstrates how we can harness creative methods to amplify unheard voices, bridge divides between disciplines, and ensure that research does not remain confined to academic journals but reaches the people and systems it seeks to influence. It is a reminder that human dignity begins with being heard, and that building inclusive futures requires us to find new ways of listening.
The performance Unheard is freely available to watch, share, and use in education, training, and advocacy. But more than a video, it is an invitation. It asks each of us: whose voices remain unheard in your work, your community, your systems? And what might change if you truly listened?
