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Democratising discursive design: co-creation of digital patient stories for COPD care
Umeå universitet, Medicinska fakulteten, Institutionen för samhällsmedicin och rehabilitering, Avdelningen för fysioterapi.ORCID-id: 0000-0002-0693-570x
Umeå universitet, Teknisk-naturvetenskapliga fakulteten, Designhögskolan vid Umeå universitet.ORCID-id: 0000-0002-3542-5717
Umeå universitet, Medicinska fakulteten, Institutionen för samhällsmedicin och rehabilitering, Avdelningen för fysioterapi. Umeå universitet, Medicinska fakulteten, Institutionen för folkhälsa och klinisk medicin, Avdelningen för medicin.ORCID-id: 0000-0001-7334-8698
(Engelska)Manuskript (preprint) (Övrigt vetenskapligt)
Abstract [en]

Discursive Design positions design as a form of discourse, creating opportunities for reflection and debate, and offering an alternative approach to healthcare interventions. Democratising the development of its artefacts is essential to address challenges identified in current Discursive Design projects such as limited multidimensional problem exploration, inadequate localisation of issues, and the neglect of positive, inspiring discourses. In this study, we adopted co-creation as a democratic methodology to tackle these challenges. Co-creation ensured that voices of all participating stakeholders were actively and meaningfully represented throughout the design process. We co-created digital patient stories for chronic obstructive pulmonary disease (COPD) care, using discursive materials to encourage deeper exploration and reflection during the process. Throughout the process, we observed how discursive materials were integrated at different stages of co-creation and reflected on their impact in healthcare design process. We also explored the role of ethnographic elements embedded within co-creation practices and how they might enhance the potential of digital patient stories as Discursive Design artefacts, offering more nuanced and empowering ways to address complex healthcare challenges.

Nationell ämneskategori
Design Hälsovetenskaper
Identifikatorer
URN: urn:nbn:se:umu:diva-245901OAI: oai:DiVA.org:umu-245901DiVA, id: diva2:2009176
Tillgänglig från: 2025-10-27 Skapad: 2025-10-27 Senast uppdaterad: 2025-10-27Bibliografiskt granskad
Ingår i avhandling
1. Empowering healthcare through design: building trust in co-creation and design research through the lens of chronic obstructive pulmonary disease
Öppna denna publikation i ny flik eller fönster >>Empowering healthcare through design: building trust in co-creation and design research through the lens of chronic obstructive pulmonary disease
2025 (Engelska)Doktorsavhandling, sammanläggning (Övrigt vetenskapligt)
Alternativ titel[sv]
Att stärka vården genom design : att bygga tillit i samskapande och designforskning med fokus på kroniskt obstruktiv lungsjukdom (KOL)
Abstract [en]

Anchored in the context of co-creation in hospital care for patients with advanced chronic obstructive pulmonary disease (COPD), this thesis investigates how co-creation and design research can meaningfully contribute to addressing complex challenges within healthcare. The central research question guiding this inquiry was: How can co-creation be employed in the design of health interventions for people with severe COPD who have experienced hospitalisation due to exacerbations?

To address this question, this thesis took a phased approach: a scoping review of existing co-creation practices was conducted (Paper I), informing the planning of co-creation workshops that were aimed at improving hospital care for people with severe COPD. Qualitative content analysis was applied to analyse the transcripts of the parts of the workshops relevant to exploring the experiences and expectations of patients (Paper II). The Research through Design (RtD) approach, also known as practice-based research, which incorporates methods and processes from design practice, was adopted for four Design Experiments that focused on developing different types of intervention for improving COPD hospital care (Papers III–VI). Four Design Experiments focused on reflecting co-creation workshops as case studies. The co-creation workshops drew on two complementary design theoretical frameworks: transition design, which offers a systems-level, future-oriented perspective for developing sustainable strategies, and Discursive Design, which provokes reflection on and dialogue around complex healthcare issues through artefacts, narratives, and speculative scenarios. 

The practical contributions of this thesis are sixfold. First, the scoping review (Paper I) identified key limitations in current co-creation practices for non-pharmacological COPD interventions: lack of theoretical grounding, over-reliance on consultative methods, and minimal focus on implementation. The thesis recommends theory-based systematic planning, embedding implementation considerations throughout, using more creative participatory methods, and including patients with varying severities and comorbidities in co-creation research. Second, the qualitative content analysis (Paper II) revealed that COPD hospital care experiences are shaped by diverse individual needs, underscoring the importance of person-centred care. Key intervention areas include proactive help-seeking, enhanced patient education, specialised practitioner training, continuity of care, improved discharge services, and public awareness. Third, Paper III reflected on applying a transition design-based model for addressing complex healthcare challenges, using COPD hospital care as a case study. It demonstrated how co-creation, combined with appreciative intelligence, builds systems thinking and shared understanding, while decentralising designer roles in order to empower co-creators. The study highlights the model’s potential to enhance implementation and sustainment of system-level interventions, while recognising the need for clear method selection and rigorous evaluation in future research. Fourth, Paper IV introduced the Ecology of Design Briefs as a novel approach to facilitate inclusive communication of co-creation findings and foster interdisciplinary solutions to complex health-system challenges. This approach was applied in COPD care as a case study. By improving problem communication and aligning with realistic design practices, this approach enhances public engagement and the potential impact of health innovation, while also appealing to funding bodies interested in multidisciplinary approaches. Fifth, Paper V recommended careful planning of discursive materials in healthcare co-creation, and the strategic use of co-creation within Discursive Design to tackle complex challenges. Discursive materials link process stages and create shared language among stakeholders, fostering ownership, deeper problem exploration, and patient empowerment. The design ethnographic characteristics within co-creation grounds interventions in stakeholders’ lived experiences and local contexts, promoting participatory, context-sensitive solutions that better fit real-world healthcare and support sustainable change. Sixth, Paper VI detailed the co-creation of patient-education tools for severe COPD, highlighting the involvement of patients, families, and healthcare practitioners. Suggested key success factors in future similar co-creation processes include managing creativity among co-creators, ensuring equity, recognising the roles of family and management, and adopting an ecological perspective. 

Ultimately, this work makes a hopeful contribution to the evolving field of co-creation as a research method in COPD care. It aspires to support inclusive, interdisciplinary dialogue and action among designers, clinicians, and researchers.

Ort, förlag, år, upplaga, sidor
Umeå: Umeå University, 2025. s. 142
Serie
Umeå University medical dissertations, ISSN 0346-6612 ; 2390
Nyckelord
co-creation, design research, chronic obstructive pulmonary disease, transition design, discursive design
Nationell ämneskategori
Design Hälso- och sjukvårdsorganisation, hälsopolitik och hälsoekonomi
Forskningsämne
medicinsk humaniora; design
Identifikatorer
urn:nbn:se:umu:diva-245824 (URN)978-91-8070-827-2 (ISBN)978-91-8070-828-9 (ISBN)
Disputation
2025-11-21, Hörsal HUM.D.220 - Hjortronlandet, Umeå, 13:00 (Engelska)
Opponent
Handledare
Forskningsfinansiär
EU, Horisont 2020, 956501Region Västerbotten, RV981572
Tillgänglig från: 2025-10-31 Skapad: 2025-10-24 Senast uppdaterad: 2025-10-27Bibliografiskt granskad

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An, QingfanKuenen, ChristoffelWadell, Karin

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