NZ Gerontology keynote Nov 2022

1. Transforming Healthcare:
the power of participatory
co-design and creative
arts-based research
Professor Evonne Miller
Director - QUT Design Lab @evonnephd
Queensland University of Technology

2. About Me: Professor of Design Psychology
& Director of QUT Design Lab
@evonnephd
e.miller@qut.edu.au

3. Why Co-Design & Creative Approaches?
1. Authentic Voices
2. Transformative Impact
3. Enable "futures" dialogue
Why Co-Design &
Creative Approaches?

5. tackling these challenges will require the fresh
thinking offered by design & creative arts
Accept (thrives on) uncertainty and
complexity of interconnected complex
systems, problems, & solutions
People focused: with, not for. Empathy and
participatory human-centered co-design.
All of us are smarter than one of us.
Communicates memorably and visually
- using storytelling & visualisations
Image: Lewrick et al.,(2020). The design thinking playbook.

6. Arts-based storytelling, by engaging our
emotions and senses through visual imagery,
narrative, imagination, & metaphor, creates
what Jack Mezirow (2003) labels a
Transformative Learning Experience.
ABR have a unique capacity to:
“educate, inspire, illuminate, resist, heal and
persuade… [connecting] us with these who are
similar and dissimilar, open up new ways of seeing
and experiencing, and illuminate that which often
remains in darkness”
p. ix, Leavy (2020). When method meets art: Arts-based research practice
Mezirow (2003). Transformative learning as discourse. Journal of Transformative Education

7. 1. RESEARCH POETRY 2. PHOTOGRAPHY
PHOTOVOICE
3. DRAWING
/ ILLUSTRATIONS
4. DRAMA 5. PARTICIPATORY CO-
DESIGN / DESIGN
THINKING
Applying design
& creative-arts based
research methods in healthcare
Arts-Based Research Methods Design

8. ABR “combines the tenets of the
creative arts in research
contexts…. methodological tools
used by researchers… during any or
all phases of research, including
problem generation, data or content
generation, analysis, interpretation,
and representation”
Defining Arts-Based Research?
p. 4, Leavy, 2017

9. a novel creative analysis where poems (or poem-like prose)
are constructed from research data
1. Research Poetry

10. powerful combination of photovoice & research poetry
RESEARCH POETRY: THE POWER OF PARTICIPATORY CREATIVE ARTS-BASED METHODS
insideagedcareproject.wordpress.com

11. How? Two deceptively
simple steps
1. Non-linear deep dive into interview transcripts searching for key
words, phrases, & sentences (analogous to qual. data reduction)
2. Participants’ words arranged and rearranged to craft a poem
A Note on Quality - different standards for
research poems (artistic & scientific merit)

12. Stephen Dunning & William Stafford (1992)
Getting the Knack: 20 Poetry Writing Exercises. Urbana, IL: NCTE.

13. Miller, E. (2018). Breaking research boundaries: A poetic representation of life in an aged care facility. Qualitative Research in Psychology.

14. FIRST FIVE MINUTES: What made you
come here? Well my family decided that I
was too old to be on my own and I needed
organising (laughs). How did you feel about
that (laughs)? Not at all. Not at all,
ok...(laughs). Because everything had to go
by the board. You lose practically everything
to come in here. This is all we have got left
now. Right..so, in terms of your furniture and
your items ----- Yeah, you lose everything.
You only have the barest minimum. As you
can see, there's not much here. It is not nice..
at all.
LAST TEN MINUTES Do you feel sad,
ever? Sad? Like tears/sad? Yeah. Strongly?
You get so frustrated at times, you could
scream the place down. Is there anything else
that you would like to say that I haven't
asked about? I think I have said more than
enough (laughs).
Pick most engaging phrases
from throughout
the hour-long interview
(start & end)
‘Scream the Place Down’
Joyce, 87

15. my family said
I was too old -
too old, to be on my own
that I needed organising.
But, you lose everything -
you lose everything
to come in here.
As you can see ,
you only have
the barest minimum.
There's not much here.
It is not nice,
not nice at all.
It is not good for me
I CAN’T GET OUT!
That's what you lose, when you come in.
All your independence -
is taken away from you.
I'm not able to do it myself -
that's very hard to take,
You get so frustrated
at times, you could
scream the place down
‘Scream the place down’
Joyce, 87
Miller, E., Donoghue, G., & Holland-Batt, S. (2015).
“You could scream the place down”: Five poems on the
experience of aged care. Qualitative Inquiry, 21(5), 410-417

16. “ICCEE” – a ‘how-to’ guide
for research poets in ageing
1.Immersion
2.Creation
3.Critical Reflection
4.Ethics
5.Engagement
“although at first the path may seem challenging, full of slips and icy terrain, it
becomes a more obtainable undertaking with the help of a guide (and a little grit)”
Miller, E. (2019). Creating research poetry: A nursing home example. In Áine
Humble and Elise Radina (Eds.). How Qualitative Data Analysis Happens: Moving
behind ‘themes emerged’. USA: Palgrave Macmillan

17. •no one agreed upon approach
of how to turn transcripts into poetry
• typically use established narrative markers
( “I”, “we”,”) to identify/group story
• may use only participant’s own words
OR add/alter words: a priority to capture
“the interviewee’s unique rhythm, pauses,
emphasis, breath-points, syntax, and
diction”
Richardson, L. (2002). Poetic representations of interviews. Health Care for Women International, 31(11): 981-996.
Glesne, C. (1997). That Rare Feeling: Re-presenting Research Through Poetic Transcription. Qualitative Inquiry, 3(2), 202-221.

18. A phrase, word, or a
memorable description
may jump out..
@evonnephd
ICCEE STEP 1. Immersion

19. Forgotten
Alot of people think of us
of older people
as something that should be
shoved,
in the corner,
forgotten.
when you are getting old
you don't want
to feel
forgotten.
you want to -
live life
to the fullest
live for today
don't worry about next week.
just sit back and enjoy it.
And thank God
I am still here
Florence, age 79
• Purposely evocative title resonates, evoking shared
cultural narrative and fear of ‘being forgotten’—in
life & aged care
• Direct second-person address - you don't want to
feel forgotten
• Imagery engages - ‘shoved into a corner’
• Implicit question:
are you living your life to the fullest?
Embodied experience - make reader feel
ICCEE Step 2: Creation

20. ICCEE Step 3: Critical Reflection
You must critically assess quality.
Less engaging poems feel “flat and contrived ”
Pay attention to detail – ponder titles, word
choice, emotion, rhyme, metaphor, imagery..
these choices determine the impact of a poem.

21. Criteria Poem Explanation
Artistic
concentration
(attention to poetic
detail and feeling)
You could scream the
place down
From the purposely evocative title with its memorable deployment of metaphor, to repetition of words and phrases
using the rhetorical technique of anaphora (e.g., “You lose everything, you lose everything, to come in here”), poem
utilises an array of poetic tools (sound, rhyme, word choice, enjambment) to engage the reader.
Embodied
experience (makes
reader feel)
Life’s different, over
80
Reader has visceral experience of this older women’s feeling of loss, sadness and resigned acceptance, recounting
outliving her family, being too old to make new friends and television as her only trusted companion. Poem’s direct
second-person address implicates reader in speaker’s feelings/thoughts of (e.g., ‘you don’t realise / what you are
giving up’).
Discovery
/ Surprise
(learn)
You’re taken care of Generally positive, poem’s last lines surprise with humour: “though I haven’t been able / to find a nice man yet”.
Subtly challenges stereotypes, surprises with particularity of the speaker’s voice, the colloquialisms and
vernacular syntax (e.g., “I don’t do no work’; ‘I got me own furniture’), evoke a memorable sense of personality
accompanying experiences
Conditionality Poems 1-3 vs. 4 & 5 Presenting five poems emphasises individual, conditional partiality of aged care experience: poems give a balanced
view, traversing both positive and negative responses to aged care
Narrative truth
(facts ring true)
Can't pretend teenager Tone is intimate and honest, reflecting on the reality of coming to terms with ageing in aged care. Deploys several
colloquialisms and rhetorical questions, as seen in its title, which add to aura of authenticity.
Transform (social
change)
Life’s different Rare insight into day-to-day lived experience of aged care, especially transition relying on staff to help with intimate
activities of daily living, such as showering and dressing.
Evaluating Research Poems: Applying Faulkner’s six “ars poetica” criteria
Faulkner, S. L. (2007). Concern with craft: Using Ars Poetica as criteria for reading research poetry. Qualitative Inquiry, 13(2), 218-234.
Debate re “good-enough” poetry while learn craft vs. argument much poetry written by social science researchers is inferior. Faulkner
(2007) provocatively notes she is ‘tired of reading and listening to lousy poetry that masquerades as research and vice versa’ (p.220).

22. Decision Point 1:
Concept of “Home” – Title, Length,
Ending, and Concrete Presentation
Decision Point 2:
“Free from Stress; Free from
Worry”
give yourself grace & space to grow
as a Research Poet

23. ICCEE Step 4: Ethics
• Ethical engagement:
- poetry training for residents
- self-selected pseudonym
- explicit member checking;
wife felt ‘too negative…
write another’
• Exhibition: 2 private
viewings – yet, on day:
‘remove my poem’

24. ICCEE Step 4: Ethics
• Ethical engagement:
- poetry training for residents
- self-selected pseudonym
- explicit member checking;
wife felt ‘too negative…
write another’
• Exhibition: 2 private
viewings – yet, on day:
‘remove my poem’

25. ICCEE STEP 5: Engagement
(a) engage with poets & practice of poetry
(b) engage with the public
“remove the false mask of academic distance and expertise to reveal,
poetically, the human dimensions beneath”
(Galvin & Prendergast, 2016, p. 104)
Maya Angelou, Dorianne Laux, Wyn Cooper, William Stafford
“I was petrified the first time I read a transcript poem in public:
Thoughts that ran through my mind were: How could I (a non-
poet) dare to engage with this artistic medium? What would the
general public, my academic peers, and industry networks think?
Would they laugh at my first attempt to engage with poetry,
thinking it too was trite, too sentimental, simply not very good or
just not academically rigorous?”
Miller, 2019

26. 1. RESEARCH POETRY
2. PHOTOGRAPHY /
PHOTOVOICE 3. DRAWING
/ ILLUSTRATIONS
4. DRAMA 5. PARTICIPATORY CO-
DESIGN / DESIGN
THINKING
Applying design
& creative-arts based
research methods in healthcare
Arts-Based Research Methods
Design

27. Photovoice – joining photography with voice
Photovoice –
a participatory
qualitative research
methodology,
where research
participants
take photographs to
communicate &
advocate on
a specific topic
(Wang & Burris, 1997)

28. 1. Enable community reflection on strengths or concerns;
2. Promote knowledge and critical dialogue through discussion of photographs;
3. Reach decision makers and advocate for change
Caroline Wang & Mary Ann Burris (1997) - photovoice is a visual
methodology with 3 goals:
Wang, C. & Burris, M. A. (1997). Photovoice: Concept, methodology, and use for participatory needs assessment. Health Education & Behavior, 24, 369-387

29. PHOTOVOICE PROJECTS
HDR SUPERVISION
METAPHORS
OUR CARE JOURNEY
REHAB EXPERIENCE
THE FACES OF AGEING
INSIDE AGED CARE

30. Photovoice in Aged Care

31. • Not familiar with cameras… photography rare
• Stiff, arthritic fingers
• Tendency towards positive (most photographs)
• Vulnerable / Power / Limited Advocacy / Critical Analysis
• Wanting to be IN pictures
PHOTOGRAPHIC LITERACY IN MY PARTICIPANTS
King, T. & Miller, E. (2021). Where were you during the Queen’s visit? Using photographs to facilitate collective storytelling, resident identity and
positive care relationships in aged care. Australasian Journal on Ageing, 40(3), e269-e272

32. PROCESS & OUTCOME – TASK INSTRUCTIONS & CO-CREATION OF PUBLIC NARRATIVE
.
Recommended Book:
Amanda Latz (2017) – Photovoice research in education and beyond: A practical guide from theory to exhibition

33. ”Just to see your whole life wiped away like
that, from you, you know....
I said, "Wherever I go, that angel comes
with me. I won't go anywhere unless she
follows me. And she's beautiful”
Matilda, age 82
Photograph provides visual data, narration provides
context and meaning, way-finding for the viewer
Matilda: Unexpectedly admitted to aged care from hospital; never able to return to her home to pack her belongings. Her family packed up her
unit and sold most of her belongings in a garage sale
PHOTOGRAPHIC LITERACY (BE IN PICTURES), IMAGE QUALITY & VALUE OF NARRATION

34. ADVANTAGE OF FOUND POETRY
"you don't start from scratch. All you have to do
is find some good language and ‘improve' it”….
"poems hide in things you and others say and
write….”…. just keep “your ears and eyes alert to
the possibilities in ordinary language”
Stephen Dunning & William Stafford (1992)
Getting the Knack: 20 Poetry Writing Exercises. Urbana, IL: NCTE.
BALLONS FOR CAROL
Miller, Evonne, Devlin, Nicole, Buys, Laurie, & Donoghue,
Geraldine (2020) The happiness initiative: Changing organizational
culture to make 'brilliance' mainstream in aged care. Journal of
Management and Organization, 26(3), pp. 296-308.

35. ETHICS & REPEATED, LAYERED CONSENT
THE FACES OF AGEING

36. The Power of a Photograph – Pearl’s Room

37. “Oh it’s a mess,
but I know where
everything is.
I’ve got all my
secrets in here”
Pearl

38. After the accident: Pearl’s room stripped of her previous spatial identity
“Oh I’m not sure who I am”
GD: field notes
PLEASE DON’T SHARE

39. Inside Aged Care
(image credit: Tricia King)
“Oh I’m not sure who I am”
GD: field notes
PLEASE DON’T SHARE
Before and after
“
Oh I’m not sure who I am”
GD: field notes

40. Inside Aged Care (image credit: Tricia King)
Risk & Regulation in Aged Care – Pearl
Before the accident:
Pearl’s room full of autonomous spatial identity

41. 1. RESEARCH POETRY
2. PHOTOGRAPHY /
PHOTOVOICE 3. DRAWING
/ ILLUSTRATIONS
4. DRAMA 5. PARTICIPATORY CO-
DESIGN / DESIGN
THINKING
Applying design
& creative-arts based
research methods in healthcare
Arts-Based Research Methods
Design

42. ‘Everyday People’ - drawing to communicate ‘experience of ageing’

43. ‘Everyday People’ - drawing to communicate ‘experience of ageing’

44. ‘Everyday People’ - drawing to communicate ‘experience of ageing’

45. DIGITAL EXHIBITION –
CO-DESIGNING CARE
(1) what unmet needs do carers have?
(2) what is the value of the co-design process in
developing an app for carers?
(3) how might design & creative arts-based research
methods represent care journey differently?
www.ourcarejourney.wordpress.com
Miller, Evonne & Zelenko, Oksana (2022) The Caregiving Journey: Arts-Based Methods as Tools for Participatory
Co-Design of Health Technologies. Social Sciences, 11(9)

46. Drawing – in workshops, to convey lived
experience. Our Care Journey Project

47. Our Care Journey
Photovoice – ‘Always Messy’
Artist Stephanie Bonson – Carer carrying
‘weight of the world’ on shoulders

56. Love & Loss –
ghostly presence still in his
favourite chair
The arts, as Patricia Leavy explains, have
a unique capacity to “educate, inspire,
illuminate, resist, heal and persuade…
[connecting] us with these who are
similar and dissimilar, open up new ways
of seeing and experiencing, and
illuminate that which often remains in
darkness” (p. ix, 2015).
Artist Stephanie Bonson

57. 1. RESEARCH POETRY
2. PHOTOGRAPHY /
PHOTOVOICE 3. DRAWING
/ ILLUSTRATIONS
4. DRAMA 5. PARTICIPATORY CO-
DESIGN / DESIGN
THINKING
Applying design
& creative-arts based
research methods in healthcare
Arts-Based Research Methods
Design

58. The Future of Aged Care?
We are living through the 4th Industrial Revolution - the unprecedented fusion of
emergent technologies across physical, digital and biological spheres that is changing the
“what” and “how” of doing things, as well as “who” we are

59. Why do we talk about
robots in one care setting
– and not the other?

60. Bioethics philosopher Robert Sparrow's provocation -
a futurist nursing home, run by robots
Sparrow, R. (2016). Robots in aged care: A dystopian future? AI & Society, 31(4), 445–454.

61. Making(activities) VR in aged care more sustainable?
Making activities - VR - in aged care more sustainable?
• Project Motivation – conference story, VR googles on shelf
• Limited Leisure – “so boring that the same cards always win at Bingo”
• Facebook/Meta Philanthropy Grant – creative arts processes to engage/educate

62. VR in Aged Care Toolkit Project – 3 RAC in QLD, 3 in VIC

63. Creative use of Film – VR Project. Transcendence, Play 3: Eddie – One Last Swim Before the Sun Sets.
Acted by Zachary Boutlon (10 Minutes).

64. ”
ABR create a space for imagining potential future(s) and “risky
storytelling”, enabling “trying on” of different perspectives and
perspective transformation, Mezirow’s transformative learning experience

65. 1. RESEARCH POETRY
2. PHOTOGRAPHY /
PHOTOVOICE 3. DRAWING
/ ILLUSTRATIONS
4. DRAMA
5. PARTICIPATORY CO-
DESIGN / DESIGN
THINKING
Applying design
& creative-arts based
research methods in healthcare
Arts-Based Research Methods Design

66. HEAL:
Case Study of
Transforming
Healthcare – by
Design
Healthcare Excellence
AcceLerator (HEAL)
Design-Led Innovation = Creating a Dialogue of Positivity & Possibility,
With Tangible Artefacts of Change

67. The transformative power of design & designers,
in collaboration with clinicians and consumers
HEAL is Design Thinking &
Doing in Action

68. DEFINE
IDEATE
PROTOTYPE
TEST
ASSESS
DESIGN THINKING PROCCESS
THE DESIGN PROCESS IS NOT LINEAR
Problem
Space
EMPATHIZE
Solution Space

69. Bridge Labs,
HEAL &
the QUT Design
Research Team
Bridge Labs-
2022 Queensland Health
Award for Innovation
because “the wisdom is the
system”, HEAL is a partnership
between healthcare teams,
consumers & the design
community….

70. HEAL Genesis & Journey – 2020-2022
HEAL is a circuit-breaker,
co-creating a radical,
genuinely collaborative &
experimental mindset
prioritizing forward
movement & rapid
implementation

71. 30+ HEAL Projects, Across 8 Qld HHS – 2020-2022
Spatial: Architecture, Landscape, & Interior Architecture
Experiential : Interactive, Industrial Design, Fashion, & Visual Communication

72. Driving Ideas
Co-Design &
DesignThinking
Workshops –
from 6-100+ people

73. QUT-Led: A/Prof Jen Seevinck, Prof Evonne Miller,
Kirsten Baade, & Gillian Risdale
Playful Placemaking at
Queensland Children’s Hospital

74. QUT-Led: A/Prof Marianelle Chamorro-Koc, Dr Rafael Gomez,
Isabel Bryam
Prototypes for Child-Friendly PPE

75. QUT-Led: Prof Lisa Scharoun, Prof Evonne Miller,
Zoe Ryan
Redesigning Visual
Communication to Reduce
Urine Contamination

76. QUT-Led: Evonne Miller, Lisa Scharoun, Ruari
Elkington, Shane Pike
Re-designing how prisoners
request and access health services

77. QUT-Led: Prof Evonne Miller, Jessica Cheers
Cairns HHS: Co-Creating Virtual Care

78. QUT-Led: Dr Manuela Taboada, Thalia Bruner, with Kirsty Leo
Animating Cultural Safety

79. QUT-Led: Prof Evonne Miller
WM: Connecting Rehab Services
Across West Moreton
• Appreciative Inquiry
• Videography
• Photovoice
• Design Thinking
• Exhibition

80. Creating space for critical transformative dialogues,
reflection & action – Arts-Based Research & Design
1 Min: Sketching “Exceptional Moments” of Practice

81. SYSTEM ANALYSIS - HMF
Surfacing Hopes, Myths, Fears–staff & patient
HONEST CONVERSATIONS

83. At their best, participatory design
methods and arts-based research
create a psychologically safe space
- for reflection, projection and
provocation… for sharing and
imagining what might be?
Transformative learning experiences that help creating a futures
orientated, change-ready learning organization & culture
Jack Mezirow, 2000

84. Learning 1.
As well as being visionary, a
design-led approach enables the
creative co-creation of a
compelling, vision for change
Creativity, the production of novel and useful ideas, is a clear
strategic advantage in contemporary healthcare - because
disrupting multiple legacy systems (IT, organizational structures,
processes) needs resilience, energy & creative vision

85. Learning 2.
Creative arts & design
methods purposely and
memorably amplify
consumer voices
to change the status quo, design thinks & communicates DIFFERENTLY
• Asks different questions: WITH people, NOT to them
• Memorable VISUAL language

86. Listen to, amplify voices of & support the
patient work of healing and the
clinician/staff work of clinical care
– caring for the people who care
Design methods create space for quality
conversations on entrenched challenges – for
seeming what we don’t know.
Learning 3
Fable: 6 Blind Men & the Elephant – in developing a
common understanding, must acknowledge we are only
partially right and hold only partial information
Poem -
John
Godfrey
Saxe (1872)

87. “the illiterate of the 21st century will not be
those who cannot read or write,
but those who cannot learn,
unlearn & relearn”
Alvin Toffler (1970) Future Shock

88. Prof Evonne Miller
@evonnephd
Transforming
Healthcare:
the power of
participatory
co-design & creative
arts-based research