Umeå University's logo

Introduction: Hospital care is critical when assessing the overall quality of chronic obstructive pulmonary disease (COPD) care, particularly for people living with severe COPD who are frequently hospitalised due to exacerbations. The hospitalisation experience for people with COPD is often complex, involving various interactions and has been reported to be suboptimal. A comprehensive understanding of these experiences is lacking. With the intention of informing a holistic approach in COPD hospital care, this study aimed to explore the experiences and expectations of individuals with severe COPD regarding hospital care due to exacerbations of COPD.

Methods: Acknowledging the complexity of interactions within the studied scenarios, this research employed a qualitative study design, utilising co-creation workshops for data collection. A total of 13 participants were involved in the data collection process. Five people with severe COPD were recruited using purposive sampling. In addition, one family member, four healthcare practitioners, one digital health program designer, and two hospital managers were recruited through convenience sampling. Data were collected during three co-creation workshops. During each workshop, participants were divided into subgroups focused on specific topics. Relevant transcripts from these subgroup discussions were chosen for analysis, which was conducted using qualitative content analysis.

Results: The analysis resulted in four categories that illustrate both the experiences and expectations of people with COPD regarding hospital care from admission to discharge: lack of trustworthy guidance, increased vulnerability during hospitalisation, discharge issues, and advocacy for COPD recognition. Our findings reveal some deficiencies, particularly in admission procedures, information exchange, healthcare interactions, and transitions from hospital to home. At the same time, patients also expressed appreciation for the continuous support provided by COPD nurses and home care teams.

Conclusion: This study highlights the need for person-centred care in managing COPD exacerbations. It identifies key interventions such as early help-seeking, better patient education, staff training, care continuity, improved discharge services, and public awareness. Emphasising individualised experiences, it calls for familiar care settings, collaborative discharge planning, and integration of home care to enhance hospital care quality.

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.

Objectives: This scoping review aimed to summarise available evidence relating to co-creation experiences among adults in diverse contexts. Understanding how participation in co-creation processes shapes experiences is important as it can offer insights into the improved development and effective use of such processes. Co-creation has increasingly gained attention due to its many claimed advantages and benefits to participants. There is however a lack of aggregated literature on stakeholders’ experience of the co-creation process.

Study design: Scoping review.

Methods: Arksey and O'Malley's methodological framework for conducting scoping reviews was used. A systematic search was conducted in Scopus and the Health CASCADE Co-creation Database (an open access curated database of 13,501 articles, screened for inclusion based on criteria relating to co-creation participatory research). Themes were generated through thematic analysis.

Results: We included 80 publications. Positive co-creation experiences were linked to establishing interpersonal relationships and positive group dynamics, enhanced well-being, personal development, satisfaction and fulfilment. Negative experiences were associated with initial uncertainties, project-related challenges, interpersonal issues, dissatisfaction, and disengagement.

Conclusion: This review offers insights into how co-creation shaped experiences and demonstrates the scope and characteristics of co-creation experiences. It highlights the need for further research, particularly in understanding the mechanisms underpinning and explaining experiences and in strategies for promoting positive experiences and mitigating negative experiences.

Background: Co-creation engages diverse stakeholders, including marginalized populations, in collaborative problem-solving to enhance engagement and develop contextually appropriate solutions. It is increasingly recognized as a way to democratize research and improve the impact of interventions, services, and policies. However, the lack of synthesized evidence on co-creation methods limits methodological rigor and the establishment of best practices. This review aimed to identify co-creation methods in academic literature and analyze their characteristics, target groups, and associated benefits and challenges.

Methods: This scoping review follows the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews. The search was conducted in the Health CASCADE database v1.5 (including CINAHL, PubMed, and 17 additional databases via ProQuest) from January 1970 to March 2022. Data was aggregated and summarized, with qualitative data analyzed using Braun and Clarke's six-phase thematic analysis approach.

Results: The review included 266 articles, identifying 248 distinct co-creation methods published between 1998 and 2022. Most methods were rooted in participatory paradigms (147 methods), with 49 methods derived from co-approaches like co-creation, co-design, and co-production, and 11 from community-based health promotion and action research. Methods were applied across 40 target populations, including children, adults, and marginalized groups. Many methods (62.3%) were delivered face-to-face, with 40 articles incorporating digital tools. Thematic analysis revealed nine benefits, such as enhanced creativity, empowerment, and improved communication, and six challenges, including resource constraints and systemic and structural barriers.

Conclusion: This review emphasizes the importance of robust documentation and analysis of co-creation methods to inform their application in public health. Findings support the development of collaborative co-creation processes that are responsive to the needs of diverse populations, thereby enhancing the overall effectiveness and cultural sensitivity of the outcomes. This review highlights the potential of co-creation methods to promote equity and inclusion while emphasizing the importance of evaluating and selecting methods tailored to specific objectives, offering a critical resource for planning, conducting, and evaluating co-creation projects.

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.

Background: The growing interest in co-creation for public health innovation highlights the need for systematic approaches to stakeholder engagement. Despite its potential, co-creation faces substantial challenges, including unresolved power dynamics, poor reporting of methods and the absence of a universally agreed-upon definition. Current research reveals substantial fragmentation in co-creation literature, with limited guidance on method selection and principle alignment. This study addresses these gaps by developing a framework for systematically evaluating method alignment with key co-creation principles, offering a structured approach to fostering more effective and adaptive collaborative processes.

Methods: Using a structured review approach based on the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines, image-based models representing co-creation principles from academic and non-academic sources were identified and assessed. A framework was created through an iterative development process. The framework was subsequently validated by 12 geographically diverse co-creation researchers using a closed card sort method, ensuring its robustness and applicability across different research contexts.

Results: The Co-Creation Rainbow Framework was developed by integrating key features from 20 included models, creating an individual-to-collective continuum with five sections (informing, understanding, stimulating, collaborating and collective decision-making), and three themes (engage, participate and empower). Successfully mapping 416 methods to the framework demonstrated its robust capability to differentiate and categorize co-creation methods, and reveaed nuanced variations in methodological strategies used by researchers and practitioners across different contexts.

Conclusions: The Co-Creation Rainbow Framework addresses the disconnect between theoretical and practical co-creation approaches through operationalising co-creation principles. By challenging traditional linear models and acknowledging the diversity of co-creation methods, the framework provides a nuanced and adaptable tool for systematically evaluating method alignment. The framework offers researchers and practitioners a robust tool for meaningful collaborative innovation, ultimately opening new pathways for collective problem-solving and knowledge generation.

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.

Background: Adapting co-creation research processes and/or public health interventions improves the fit between the intervention and population of interest, potentially resulting in more relevant and effective interventions. Mode 2 research approaches (e.g., co-creation, co-production, co-design, community-based participatory research, and participatory action research) can ensure that adaptations fit the socio-cultural and economic contexts. However, an overview of existing practices and how to co-adapt is lacking. This study aimed to provide an overview of the use of co-adaptation in co-creation processes and/or public health interventions.

Methods: We conducted a rapid review search on the Health CASCADE co-creation database. Relevant peer-reviewed studies reporting on co-adaptation of public health interventions were identified. A call for case studies via social media and co-authors’ snowballing was issued to perform interviews with co-creation researchers gaining insights into how co-adaptation was applied from unpublished studies and practice. Interviews were analysed using template analysis.

Results: Fourteen studies addressed various public health issues by co-adapting co-creation processes, intervention activities, communication platforms, monitoring strategies, training components, and materials’ language and tone. Most studies lacked detailed reporting on the co-adaptation process, though some provided information on group composition and number, duration, and methods applied. Two out of 14 studies used a framework (i.e., Intervention Mapping Adapt), seven described their adaptation procedure without naming a specific framework, and five did not report any procedures or frameworks. Five of seven case studies used adaptation frameworks (e.g., ADAPT guidance). Interviews provided insights into the co-adaptation process emphasising the importance of contextual fit, integrating prior knowledge, and logging adaptations.

Conclusions: This study is the first introducing the concept of and exploring co-adaptation of co-creation processes and/or public health interventions. It provides details regarding adaptations made, whether and which frameworks were used, and procedures applied to adapt. The findings highlight the need for tailored frameworks for co-adaptation and better reporting of co-adaptation processes.

Objectives: This study identifies facilitators and challenges in the co-creation of digital health interventions for public health.

Study design: An exploratory multiple case study design was used to analyse three co-created digital health interventions.

Methods: Data were collected for three digital health interventions via expert interviews (n = 11), open-ended survey responses (n = 10), and project descriptions. Qualitative content analysis was conducted to identify common themes across cases.

Results: Key facilitators included leveraging co-creator expertise, maintaining regular co-creator exchanges, ensuring an adaptive development process, carrying out a needs analysis and adopting a feasible design. Key challenges included resource constraints, difficult co-creator relationships, poor planning of co-creation, difficulties in recruiting and acknowledging co-creators, distributing workload fairly, and unclear expectations and skills/knowledge gap amongst co-creators.

Conclusions: Findings suggest that while the facilitators and challenges of digital health interventions reported here reflect previous literature relating to non-digital health interventions, digital settings present unique challenges, including effective integration of co-creators across iteration cycles and enabling collaboration across a large array of disciplines. Understanding facilitators and challenges in digital health intervention co-creation may help teams plan how to effectively include all relevant co-creators in the process. Future research should further explore how co-creation impacts digital health intervention adoption, user engagement, and long-term effectiveness.

Objectives: Co-creation is recognised as a promising methodology for addressing complex public health issues by leveraging the collective intelligence of multiple stakeholders to develop tailored solutions. However, there is a lack of clarity and significant fragmentation in the concept. This study aims to define the fundamental attributes and guiding principles of co-creation to establish it as a rigorous, evidence-based, and trustworthy methodology.

Study design: A participatory concept mapping process based on the Differentiae Principle was employed.

Methods: The study consisted of four stages: 1) systematic extraction of attributes and their definition from traditional scientific and participatory research methodological literature, 2) screening, 3) semantic analysis and clustering into principles using Natural Language Processing and Large Language Models and 4) selection of a final set of attributes and development of principles. The study involved 50 participants with diverse backgrounds within and outside the Health CASCADE Network over 18 months.

Results: The study identified 105 candidate attributes. A set of 38 was selected from which 10 key principles were derived (open access, recognised contribution, ethics and legal, transparency, rigorous evaluation, clear problem, plural evidence, critical reflection, diversity, and structured and flexible processes) across three domains: Governance, Scientific and Methodological Rigour, and Collective Intelligence Processes.

Conclusions: The attributes and guiding principles provide a comprehensive foundations for evidence-based co-creation, enhancing its trustworthiness, transparency, reliability, and impact in public health and other fields. Future research and practice should use these principles and attributes to refine and implement co-creation effectively.