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Empowering healthcare through design: building trust in co-creation and design research through the lens of chronic obstructive pulmonary disease
Umeå University, Faculty of Medicine, Department of Community Medicine and Rehabilitation, Section of Physiotherapy.ORCID iD: 0000-0002-0693-570x
2025 (English)Doctoral thesis, comprehensive summary (Other academic)Alternative title
Att stärka vården genom design : att bygga tillit i samskapande och designforskning med fokus på kroniskt obstruktiv lungsjukdom (KOL) (Swedish)
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.

Place, publisher, year, edition, pages
Umeå: Umeå University, 2025. , p. 142
Series
Umeå University medical dissertations, ISSN 0346-6612 ; 2390
Keywords [en]
co-creation, design research, chronic obstructive pulmonary disease, transition design, discursive design
National Category
Design Health Care Service and Management, Health Policy and Services and Health Economy
Research subject
Medical Humanities; design
Identifiers
URN: urn:nbn:se:umu:diva-245824ISBN: 978-91-8070-827-2 (print)ISBN: 978-91-8070-828-9 (electronic)OAI: oai:DiVA.org:umu-245824DiVA, id: diva2:2009000
Public defence
2025-11-21, Hörsal HUM.D.220 - Hjortronlandet, Umeå, 13:00 (English)
Opponent
Supervisors
Funder
EU, Horizon 2020, 956501Region Västerbotten, RV981572Available from: 2025-10-31 Created: 2025-10-24 Last updated: 2025-10-27Bibliographically approved
List of papers
1. A scoping review of co-creation practice in the development of non-pharmacological interventions for people with chronic obstructive pulmonary disease: a health CASCADE study
Open this publication in new window or tab >>A scoping review of co-creation practice in the development of non-pharmacological interventions for people with chronic obstructive pulmonary disease: a health CASCADE study
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2023 (English)In: Respiratory Medicine, ISSN 0954-6111, E-ISSN 1532-3064, Vol. 211, article id 107193Article, review/survey (Refereed) Published
Abstract [en]

Background: Incorporating co-creation processes may improve the quality of outcome interventions. However, there is a lack of synthesis of co-creation practices in the development of Non-Pharmacological Interventions (NPIs) for people with Chronic Obstructive Pulmonary Disease (COPD), that could inform future co-creation practice and research for rigorously improving the quality of care.

Objective: This scoping review aimed to examine the co-creation practice used when developing NPIs for people with COPD.

Methods: This review followed Arksey and O'Malley scoping review framework and was reported according to the PRISMA-ScR framework. The search included PubMed, Scopus, CINAHL, and Web of Science Core Collection. Studies reporting on the process and/or analysis of applying co-creation practice in developing NPIs for people with COPD were included.

Results: 13 articles complied with the inclusion criteria. Limited creative methods were reported in the studies. Facilitators described in the co-creation practices included administrative preparations, diversity of stakeholders, cultural considerations, employment of creative methods, creation of an appreciative environment, and digital assistance. Challenges around the physical limitations of patients, the absence of key stakeholder opinions, a prolonged process, recruitment, and digital illiteracy of co-creators were listed. Most of the studies did not report including implementation considerations as a discussion point in their co-creation workshops.

Conclusion: Evidence-based co-creation in COPD care is critical for guiding future practice and improving the quality of care delivered by NPIs. This review provides evidence for improving systematic and reproducible co-creation. Future research should focus on systematically planning, conducting, evaluating, and reporting co-creation practices in COPD care.

Place, publisher, year, edition, pages
Elsevier, 2023
Keywords
COPD, Co-creation, Creativity, Non-pharmacological interventions, Participation, Stakeholder
National Category
Nursing Health Care Service and Management, Health Policy and Services and Health Economy
Identifiers
urn:nbn:se:umu:diva-205629 (URN)10.1016/j.rmed.2023.107193 (DOI)000952167500001 ()36889517 (PubMedID)2-s2.0-85150368110 (Scopus ID)
Funder
EU, Horizon 2020, 956501
Available from: 2023-03-10 Created: 2023-03-10 Last updated: 2025-10-27Bibliographically approved
2. A qualitative study of patient experiences and expectations around hospital care during exacerbations of chronic obstructive pulmonary disease: a Health CASCADE study
Open this publication in new window or tab >>A qualitative study of patient experiences and expectations around hospital care during exacerbations of chronic obstructive pulmonary disease: a Health CASCADE study
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(English)Manuscript (preprint) (Other academic)
National Category
Other Medical Sciences
Identifiers
urn:nbn:se:umu:diva-245845 (URN)
Available from: 2025-10-27 Created: 2025-10-27 Last updated: 2025-10-27Bibliographically approved
3. Transition design: Co-creating system solutions for chronic obstructive pulmonary disease (COPD) care
Open this publication in new window or tab >>Transition design: Co-creating system solutions for chronic obstructive pulmonary disease (COPD) care
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2025 (English)In: Design Studies, ISSN 0142-694X, E-ISSN 1872-6909, Vol. 98, article id 101297Article in journal (Refereed) Published
Abstract [en]

Choosing the appropriate design process is critical for the effective implementation and long-term sustainment of interventions aimed at addressing public health challenges. To address this need, we proposed a Transition Design model to identify and deliver sustainable solutions for complex healthcare problems. This model generates system-level health-intervention initiatives that can synergistically function, particularly during the development and implementation phases, to enhance healthcare delivery. Drawing from a case study on addressing the challenges of hospitalisations and early discharge for people with acute exacerbations of chronic obstructive pulmonary disease (AECOPD), we reflected on the process and analysed the outcomes. Although further testing for the initiatives is warranted, this study contributes to the evolving discourse in design research on systems solutioning for public-health challenges.

Place, publisher, year, edition, pages
Elsevier, 2025
Keywords
collaborative design, system(s) design, sustainability, participatory design, transition design
National Category
Design
Identifiers
urn:nbn:se:umu:diva-236567 (URN)10.1016/j.destud.2025.101297 (DOI)001449657100001 ()2-s2.0-86000561057 (Scopus ID)
Funder
EU, Horizon 2020, 956501Region Västerbotten, RV981572
Available from: 2025-03-17 Created: 2025-03-17 Last updated: 2025-10-27Bibliographically approved
4. Co-creating an Ecology of Design Briefs for people with respiratory disease
Open this publication in new window or tab >>Co-creating an Ecology of Design Briefs for people with respiratory disease
2025 (English)In: CoDesign - International Journal of CoCreation in Design and the Arts, ISSN 1571-0882, E-ISSN 1745-3755Article in journal (Refereed) Epub ahead of print
Abstract [en]

In this study, we introduce a new approach to addressing the complexities of health systems challenges, which we name the Ecology of Design Briefs. This approach offers a structured framework for delivering key leverage points within these challenges and creating a conceptual space for feasible design opportunities. Acknowledging the limited reach of individual design solutions in tackling the complexities of health systems challenges, our approach draws on the ecology concept of Transition Design. The utilisation of the Ecology of Design Briefs results in a collection of interconnected specification documents for design projects that guide the creative process, working together synergistically to tackle the complexities. This approach was applied to enhance hospital care experiences for individuals with acute exacerbations of chronic obstructive pulmonary disease (COPD). Hospitalisations for this group frequently lead to multidimensional negative experiences, and addressing these issues is closely linked to resolving underlying health systems problems. Our findings suggest that the developed briefs provide comprehensive, mutually reinforcing, and detailed insights necessary for understanding these challenges. This study contributes to health systems problem-solving by conceptualising the Ecology of Design Briefs as an approach and documenting its application in a hospital care setting.

Place, publisher, year, edition, pages
Taylor & Francis, 2025
Keywords
Design brief, transition design, healthcare, co-creation, respiratory disease, systems thinking
National Category
Nursing Design Other Medical Engineering Respiratory Medicine and Allergy
Identifiers
urn:nbn:se:umu:diva-236382 (URN)10.1080/15710882.2025.2477715 (DOI)001444614200001 ()2-s2.0-86000624835 (Scopus ID)
Funder
EU, Horizon 2020, 956501Region Västerbotten, RV981572
Available from: 2025-03-12 Created: 2025-03-12 Last updated: 2025-10-27
5. Democratising discursive design: co-creation of digital patient stories for COPD care
Open this publication in new window or tab >>Democratising discursive design: co-creation of digital patient stories for COPD care
(English)Manuscript (preprint) (Other academic)
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.

National Category
Design Health Sciences
Identifiers
urn:nbn:se:umu:diva-245901 (URN)
Available from: 2025-10-27 Created: 2025-10-27 Last updated: 2025-10-27Bibliographically approved
6. Designing patient education tools: co-creation of infographics to support the hospitalisation process for individuals with severe chronic respiratory conditions
Open this publication in new window or tab >>Designing patient education tools: co-creation of infographics to support the hospitalisation process for individuals with severe chronic respiratory conditions
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2025 (English)In: CoDesign - International Journal of CoCreation in Design and the Arts, ISSN 1571-0882, E-ISSN 1745-3755Article in journal (Refereed) Epub ahead of print
Abstract [en]

This article reflects on how patient education tool design can benefit from a co-creation process with patients and key stakeholders involved, using a case study in chronic obstructive pulmonary disease (COPD) care. Unfavourable hospitalisation experiences for COPD patients are often linked to organisational issues and health literacy challenges. This study presents insights from a year-long co-creation practice involving COPD patients, a family member, healthcare practitioners, and hospital managers, aimed at developing patient education tools to enhance health literacy concerning the hospitalisation process. The primary outcome is a set of patient education infographics that can be integrated into digital platforms or printed formats. For such co-creation practice, we found that setting clear creativity expectations and using methods such as user journey maps empower participants. Balancing the power dynamics between patients and healthcare practitioners enables culturally relevant and patient-centred tools. In addition, family members play a crucial role in both co-creation process and care journey, while hospital managers ensure tools align with clinical practices. We also advocate for an ecological perspective towards intervention development, acknowledging diverse needs emerged from the co-creation process. Future research should implement strategies in further individualising infographics to improve their effectiveness.

Place, publisher, year, edition, pages
Taylor & Francis, 2025
Keywords
Patient education, infographics, co-creation, healthcare, hospitalisation
National Category
Nursing Health Care Service and Management, Health Policy and Services and Health Economy
Identifiers
urn:nbn:se:umu:diva-239084 (URN)10.1080/15710882.2025.2508730 (DOI)001491585500001 ()2-s2.0-105005793885 (Scopus ID)
Funder
Region Västerbotten, RV981572
Available from: 2025-05-22 Created: 2025-05-22 Last updated: 2025-10-27

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