Publications

@article{Longworth2024b,

title = {A review of implementation and evaluation frameworks for public health interventions to inform co-creation: a Health CASCADE study},

author = {Giuliana R Longworth and Kunshan Goh and Danielle M Agnello and Katrina Messiha and Melanie Beeckman and Jorge R Zapata-Restrepo and Greet Cardon and Sebastien Chastin and Maria Giné-Garriga},

doi = {10.1186/s12961-024-01126-6},

issn = {1478-4505},

year  = {2024},

date = {2024-12-00},

urldate = {2024-12-00},

journal = {Health Res Policy Sys},

volume = {22},

number = {1},

publisher = {Springer Science and Business Media LLC},

abstract = {Background

By including the needs and perspectives of relevant stakeholders, co-creation is seen as a promising approach for tackling complex public health problems. However, recommendations and guidance on how to plan and implement co-creation are lacking. By identifying and analysing existing implementation and evaluation frameworks for public health, this study aims to offer key recommendations for professional stakeholders and researchers wanting to adopt a co-creation approach to public health interventions.



Methods

Firstly, PubMed and CINAHL databases were screened for articles introducing original implementation and evaluation frameworks for public health interventions. Backwards snowballing techniques were applied to the included papers. Secondly, identified frameworks were classified and relevant data extracted, including steps and constructs present in the frameworks. Lastly, recommendations were derived by conducting thematic analysis on the included frameworks.



Results

Thirty frameworks were identified and data related to their nature and scope extracted. The frameworks’ prominent steps and constructs were also retrieved. Recommendations related to implementation and evaluation in the context of co-creation were included.



Conclusion

When engaging in co-creation, we recommend including implementation considerations from an early stage and suggest adopting a systems thinking as a way to explore multiple levels of influence, contextual settings and systems from an early planning stage. We highlight the importance of partnering with stakeholders and suggest applying an evaluation design that is iterative and cyclical, which pays particular attention to the experience of the engaged co-creators.},

keywords = {Evaluation},

pubstate = {published},

tppubtype = {article}

}

@article{Longworth2024,

title = {Conducting co-creation for public health in low and middle-income countries: a systematic review and key informant perspectives on implementation barriers and facilitators},

author = {Giuliana R Longworth and Oritseweyinmi Erikowa-Orighoye and Ebuka M Anieto and Danielle M Agnello and Jorge R Zapata-Restrepo and Caroline Masquillier and Maria Giné-Garriga},

doi = {10.1186/s12992-024-01014-2},

issn = {1744-8603},

year  = {2024},

date = {2024-12-00},

urldate = {2024-12-00},

journal = {Global Health},

volume = {20},

number = {1},

publisher = {Springer Science and Business Media LLC},

abstract = {Background

There has been an increase in the use of co-creation for public health because of its claimed potential to increase an intervention’s impact, spark change and co-create knowledge. Still, little is reported on its use in low-and-middle-income countries (LMICs). This study offers a comprehensive overview of co-creation used in public-health-related interventions, including the interventions’ characteristics, and reported implementation barriers and facilitators.



Methods

We conducted a systematic review within the Scopus and PubMed databases, a Google Scholar search, and a manual search in two grey literature databases related to participatory research. We further conducted eight interviews with first authors, randomly selected from included studies, to validate and enrich the systematic review findings.



Results

Through our review, we identified a total of twenty-two studies conducted in twenty-four LMIC countries. Majority of the interventions were designed directly within the LMIC setting. Aside from one, all studies were published between 2019 and 2023. Most studies adopted a co-creation approach, while some reported on the use of co-production, co-design, and co-development, combined either with community-based participatory research, participatory action research or citizen science. Among the most reported implementation barriers, we found the challenge of understanding and accounting for systemic conditions, such as the individual’s socioeconomic status and concerns related to funding constraints and length of the process. Several studies described the importance of creating a safe space, relying on local resources, and involving existing stakeholders in the process from the development stage throughout, including future and potential implementors. High relevance was also given to the performance of a contextual and/or needs assessment and careful tailoring of strategies and methods.



Conclusion

This study provides a systematic overview of previously conducted studies and of reported implementation barriers and facilitators. It identifies implementation barriers such as the setting’s systemic conditions, the socioeconomic status and funding constrains along with facilitators such as the involvement of local stakeholders and future implementors throughout, the tailoring of the process to the population of interest and participants and contextual assessment. By incorporating review and interview findings, the study aims to provide practical insights and recommendations for guiding future research and policy.},

keywords = {Implementation},

pubstate = {published},

tppubtype = {article}

}

@article{Agnello2024b,

title = {Methods Used in Co-Creation Within the Health CASCADE Co-Creation Database and Gray Literature: Systematic Methods Overview},

author = {Danielle M Agnello and George Balaskas and Artur Steiner and Sebastien Chastin},

doi = {10.2196/59772},

issn = {1929-073X},

year  = {2024},

date = {2024-11-11},

urldate = {2024-11-11},

journal = {Interact J Med Res},

volume = {13},

publisher = {JMIR Publications Inc.},

abstract = {<jats:sec>

            <jats:title>Background</jats:title>

            <jats:p>Co-creation is increasingly recognized for its potential to generate innovative solutions, particularly in addressing complex and wicked problems in public health. Despite this growing recognition, there are no standards or recommendations for method use in co-creation, leading to confusion and inconsistency. While some studies have examined specific methods, a comprehensive overview is lacking, limiting the collective understanding and ability to make informed decisions about the most appropriate methods for different contexts and research objectives.</jats:p>

          </jats:sec>

          <jats:sec>

            <jats:title>Objective</jats:title>

            <jats:p>This study aimed to systematically compile and analyze methods used in co-creation to enhance transparency and deepen understanding of how co-creation is practiced.</jats:p>

          </jats:sec>

          <jats:sec>

            <jats:title>Methods</jats:title>

            <jats:p>To enhance transparency and deepen understanding of how co-creation is practiced, this study systematically inventoried and analyzed methods used in co-creation. We conducted a systematic methods overview, applying 2 parallel processes: one within the peer-reviewed Health CASCADE Co-Creation Database and another within gray literature. An artificial intelligence–assisted recursive search strategy, coupled with a 2-step screening process, ensured that we captured relevant methods. We then extracted method names and conducted textual, comparative, and bibliometric analyses to assess the content, relationship between methods, fields of research, and the methodological underpinnings of the included sources.</jats:p>

          </jats:sec>

          <jats:sec>

            <jats:title>Results</jats:title>

            <jats:p>We examined a total of 2627 academic papers and gray literature sources, with the literature primarily drawn from health sciences, medical research, and health services research. The dominant methodologies identified were co-creation, co-design, coproduction, participatory research methodologies, and public and patient involvement. From these sources, we extracted and analyzed 956 co-creation methods, noting that only 10% (n=97) of the methods overlap between academic and gray literature. Notably, 91.3% (230/252) of the methods in academic literature co-occurred, often involving combinations of multiple qualitative methods. The most frequently used methods in academic literature included surveys, focus groups, photo voice, and group discussion, whereas gray literature highlighted methods such as world café, focus groups, role-playing, and persona.</jats:p>

          </jats:sec>

          <jats:sec>

            <jats:title>Conclusions</jats:title>

            <jats:p>This study presents the first systematic overview of co-creation methods, providing a clear understanding of the diverse methods currently in use. Our findings reveal a significant methodological gap between researchers and practitioners, offering insights into the relative prevalence and combinations of methods. By shedding light on these methods, this study helps bridge the gap and supports researchers in making informed decisions about which methods to apply in their work. Additionally, it offers a foundation for further investigation into method use in co-creation. This systematic investigation is a valuable resource for anyone engaging in co-creation or similar participatory methodologies, helping to navigate the diverse landscape of methods.</jats:p>

          </jats:sec>},

keywords = {Methodology},

pubstate = {published},

tppubtype = {article}

}

@article{Longworth2024c,

title = {Navigating process evaluation in co-creation: a Health CASCADE scoping review of used frameworks and assessed components},

author = {Giuliana R Longworth and Janneke de Boer and Kunshan Goh and Danielle M Agnello and Lauren McCaffrey and Jorge R Zapata Restrepo and Qingfan An and Sebastien Chastin and Aaron Davis and Teatske M Altenburg and Maite Verloigne and Maria Giné-Garriga},

doi = {10.1136/bmjgh-2023-014483},

issn = {2059-7908},

year  = {2024},

date = {2024-07-00},

urldate = {2024-07-00},

journal = {BMJ Glob Health},

volume = {9},

number = {7},

publisher = {BMJ},

abstract = {Background 

Co-creation is seen as a way to ensure all relevant needs and perspectives are included and to increase its potential for beneficial effects and uptake process evaluation is crucial. However, existing process evaluation frameworks have been built on practices characterised by top-down developed and implemented interventions and may be limited in capturing essential elements of co-creation. This study aims to provide a review of studies planning and/or conducting a process evaluation of public health interventions adopting a co-creation approach and aims to derive assessed process evaluation components, used frameworks and insights into formative and/or participatory evaluation.



Methods

We searched for studies on Scopus and the Health CASCADE Co-Creation Database. Co-authors performed a concept-mapping exercise to create a set of overarching dimensions for clustering the identified process evaluation components.



Results

54 studies were included. Conceptualisation of process evaluation included in studies concerned intervention implementation, outcome evaluation, mechanisms of impact, context and the co-creation process. 22 studies (40%) referenced ten existing process evaluation or evaluation frameworks and most referenced were the frameworks developed by Moore et al (14%), Saunders et al (5%), Steckler and Linnan (5%) and Nielsen and Randall (5%).



38 process evaluation components were identified, with a focus on participation (48%), context (40%), the experience of co-creators (29%), impact (29%), satisfaction (25%) and fidelity (24%).



13 studies (24%) conducted formative evaluation, 37 (68%) conducted summative evaluation and 2 studies (3%) conducted participatory evaluation.



Conclusion

The broad spectrum of process evaluation components addressed in co-creation studies, covering both the evaluation of the co-creation process and the intervention implementation, highlights the need for a process evaluation tailored to co-creation studies. This work provides an overview of process evaluation components, clustered in dimensions and reflections which researchers and practitioners can use to plan a process evaluation of a co-creation process and intervention.},

keywords = {Evaluation},

pubstate = {published},

tppubtype = {article}

}

@article{Agnello2024,

title = {Systematic Inventory of Methods Used in Co-Creation: A Health CASCADE Systematic Methods Overview (Preprint)},

author = {Danielle M Agnello and George Balaskas and Artur Steiner and Sebastien Chastin},

doi = {10.2196/59772},

issn = {1929-073X},

year  = {2024},

date = {2024-04-23},

urldate = {2024-04-23},

publisher = {JMIR Publications Inc.},

abstract = {Background

Co-creation has emerged as a strategy for cultivating collaboration and driving innovation across diverse fields, proving particularly promising in addressing complex and wicked problems in public health. There is a growing recognition of co-creation as a valuable methodology, yet, to date there is no standardized methodology or recommendations for methods appropriate for use in co-creation. While some studies have examined specific methods, a comprehensive overview of co-creation methods is still lacking, hindering conceptual clarity and collective understanding of methods appropriate for diverse contexts and research objectives.



Objective

To enhance transparency and understanding about how to co-create, this study aimed to comprehensively and systematically assess methods used in co-creation.



Methods

To ensure a thorough approach, the Systematic Methods Overview approach was applied. This was completed in two parallel processes, one within the Health CASCADE Co-Creation Database, and one within grey literature. To filter out irrelevant information, an artificial intelligence-assisted recursive search strategy and a two-step screening process were applied. Method names were extracted from the included literature and combined for analysis. We conducted textual analysis, comparative analysis, and bibliometric analyses to assess the content and relationship between the extracted methods and the methodological underpinnings of the included sources. 



Results

We examined a total of 2627 academic articles and grey literature sources. The literature primarily represented fields such as health sciences, medical research, and health services research, and the dominant research methodologies were the co-approaches (co-creation, co-design, co-production), the participatory research methodologies, and public and patient involvement. We extracted and analyzed 956 co-creation methods, with only 10.2% (97/956) of the methods overlapping between those found in academic literature and grey literature. The most frequent methods in academic literature were surveys, focus group, photo voice, and group discussion, while in grey literature they were world café, focus group, role playing, and persona. Among the methods extracted from academic literature, 91.3% (230/252) were found to co-occur, with a predominant combination of multiple qualitative methods.



Conclusions

This study produced a high-quality systematic inventory of co-creation methods. Our analysis of the sourced methods reveals a methodological gap between researchers and practitioners and offers insights into the relative prevalence of individual methods, and how they are combined. This study initiates the process of bridging this methodological gap by fostering an increased understanding and recognition of co-creation methods and their relative presence in both research and practice. Bridging this gap is crucial for advancing co-creation as a reliable methodological approach. This systematic exploration of knowledge of the various methods applied in co-creation can facilitate individuals embarking on a co-creation process, or similar participatory methodologies, by illuminating the diverse landscape of methods used in co-creation.},

keywords = {Methodology},

pubstate = {published},

tppubtype = {article}

}

@article{Agnello2023,

title = {Establishing a Health CASCADE–Curated Open-Access Database to Consolidate Knowledge About Co-Creation: Novel Artificial Intelligence–Assisted Methodology Based on Systematic Reviews},

author = {Danielle M Agnello and Quentin Loisel and Qingfan An and George Balaskas and Rabab Chrifou and Philippa M Dall and Janneke de Boer and Lea R Delfmann and Maria Giné-Garriga and Kunshan Goh and Giuliana R Longworth and Katrina Messiha and Lauren McCaffrey and Niamh Smith and Artur Steiner and Mira Vogelsang and Sebastien Chastin},

doi = {10.2196/45059},

issn = {1438-8871},

year  = {2023},

date = {2023-07-18},

urldate = {2023-07-18},

journal = {J Med Internet Res},

volume = {25},

publisher = {JMIR Publications Inc.},

abstract = {Background

Co-creation is an approach that aims to democratize research and bridge the gap between research and practice, but the potential fragmentation of knowledge about co-creation has hindered progress. A comprehensive database of published literature from multidisciplinary sources can address this fragmentation through the integration of diverse perspectives, identification and dissemination of best practices, and increase clarity about co-creation. However, two considerable challenges exist. First, there is uncertainty about co-creation terminology, making it difficult to identify relevant literature. Second, the exponential growth of scientific publications has led to an overwhelming amount of literature that surpasses the human capacity for a comprehensive review. These challenges hinder progress in co-creation research and underscore the need for a novel methodology to consolidate and investigate the literature.



Objective

This study aimed to synthesize knowledge about co-creation across various fields through the development and application of an artificial intelligence (AI)-assisted selection process. The ultimate goal of this database was to provide stakeholders interested in co-creation with relevant literature.



Methods

We created a novel methodology for establishing a curated database. To accommodate the variation in terminology, we used a broad definition of co-creation that encompassed the essence of existing definitions. To filter out irrelevant information, an AI-assisted selection process was used. In addition, we conducted bibliometric analyses and quality control procedures to assess content and accuracy. Overall, this approach allowed us to develop a robust and reliable database that serves as a valuable resource for stakeholders interested in co-creation.



Results

The final version of the database included 13,501 papers, which are indexed in Zenodo and accessible in an open-access downloadable format. The quality assessment revealed that 20.3% (140/688) of the database likely contained irrelevant material, whereas the methodology captured 91% (58/64) of the relevant literature. Participatory and variations of the term co-creation were the most frequent terms in the title and abstracts of included literature. The predominant source journals included health sciences, sustainability, environmental sciences, medical research, and health services research.



Conclusions

This study produced a high-quality, open-access database about co-creation. The study demonstrates that it is possible to perform a systematic review selection process on a fragmented concept using human-AI collaboration. Our unified concept of co-creation includes the co-approaches (co-creation, co-design, and co-production), forms of participatory research, and user involvement. Our analysis of authorship, citations, and source landscape highlights the potential lack of collaboration among co-creation researchers and underscores the need for future investigation into the different research methodologies. The database provides a resource for relevant literature and can support rapid literature reviews about co-creation. It also offers clarity about the current co-creation landscape and helps to address barriers that researchers may face when seeking evidence about co-creation.},

keywords = {Methodology, Technology},

pubstate = {published},

tppubtype = {article}

}

@article{An2023,

title = {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},

author = {Qingfan An and Marlene Sandlund and Danielle M Agnello and Lauren McCaffrey and Sebastien Chastin and Ragnberth Helleday and Karin Wadell},

doi = {10.1016/j.rmed.2023.107193},

issn = {0954-6111},

year  = {2023},

date = {2023-05-00},

urldate = {2023-05-00},

journal = {Respiratory Medicine},

volume = {211},

publisher = {Elsevier BV},

abstract = {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.},

keywords = {Implementation},

pubstate = {published},

tppubtype = {article}

}