Advancing a collective vision for equity-based cocreation through prototyping at an international forum.
arts‐based research
caregiver engagement
cocreation
codesign
equity
integration
patient engagement
Journal
Health expectations : an international journal of public participation in health care and health policy
ISSN: 1369-7625
Titre abrégé: Health Expect
Pays: England
ID NLM: 9815926
Informations de publication
Date de publication:
Apr 2024
Apr 2024
Historique:
revised:
26
01
2024
received:
06
12
2023
accepted:
18
03
2024
medline:
3
4
2024
pubmed:
3
4
2024
entrez:
3
4
2024
Statut:
ppublish
Résumé
Cocreation has the potential to engage people with lived and living experiences in the design and evaluation of health and social services. However, guidance is needed to better include people from equity-deserving groups (EDGs), who are more likely to face barriers to participation, experience ongoing or historical harm, and benefit from accessible methods of engagement. The aim of this international forum (CoPro2022) was to advance a collective vision for equity-based cocreation. A participatory process of engagement in experiential colearning and arts-based creative and reflective dialogue. Visual prototypes were created and synthesised to generate a collective vision for inclusive equity-based cocreation. The Forum was held at the Gathering Place by the Grand River in Ohsweken, Ontario, Canada. A total of 48 participants attended the forum. They were purposely invited and have intersecting positionalities (21 academic experts, six experience experts, 10 trainees, and 11 members of EDGs) from nine countries (Bangladesh, Botswana, Canada, England, Italy, Norway, Scotland, Singapore, Sweden). COPRO2022 ACTIVITIES: CoPro2022 was an immersive experience hosted on Indigenous land that encouraged continuous participant reflection on their own worldviews and those of others as participants openly discussed the challenges and opportunities with engaging EDGs in cocreation activities. Visual prototypes and descriptions created in small groups were informed by participants' reflections on the panel presentations at the Forum and their own experiences with equity-based cocreation. Following the event, the authorship team inductively coded themes from the prototype descriptions and met to discuss the cross-cutting themes. These informed the design of an illustrated collective vision for Equity Based Co-Creation (EqCC). Six prototypes were cocreated by each small group to illustrate their vision for EqCC. Within these, four cross-cutting themes were identified: (i) go to where people are, (ii) nurture relationships and creativity, (iii) reflect, replenish and grow, (iv) and promote thriving and transformation. These four themes are captured in the Collective EqCC Vision to guide a new era of inclusive excellence in cocreation activities. Service users, caregivers, and people with lived experience were involved in leading the design of the CoPro2022 and co-led the event. This included activities at the event such as presenting, facilitating small and large group discussion, leading art-based activities, and reflecting with the team on the lessons learned. People with lived experience were involved in the analysis and knowledge sharing from this event. Several members of the research team (students and researchers) also identified as members of EDGs and were invited to draw from their personal and academic knowledge.
Sections du résumé
BACKGROUND
BACKGROUND
Cocreation has the potential to engage people with lived and living experiences in the design and evaluation of health and social services. However, guidance is needed to better include people from equity-deserving groups (EDGs), who are more likely to face barriers to participation, experience ongoing or historical harm, and benefit from accessible methods of engagement.
OBJECTIVE
OBJECTIVE
The aim of this international forum (CoPro2022) was to advance a collective vision for equity-based cocreation.
DESIGN
METHODS
A participatory process of engagement in experiential colearning and arts-based creative and reflective dialogue. Visual prototypes were created and synthesised to generate a collective vision for inclusive equity-based cocreation.
SETTING AND PARTICIPANTS
METHODS
The Forum was held at the Gathering Place by the Grand River in Ohsweken, Ontario, Canada. A total of 48 participants attended the forum. They were purposely invited and have intersecting positionalities (21 academic experts, six experience experts, 10 trainees, and 11 members of EDGs) from nine countries (Bangladesh, Botswana, Canada, England, Italy, Norway, Scotland, Singapore, Sweden). COPRO2022 ACTIVITIES: CoPro2022 was an immersive experience hosted on Indigenous land that encouraged continuous participant reflection on their own worldviews and those of others as participants openly discussed the challenges and opportunities with engaging EDGs in cocreation activities. Visual prototypes and descriptions created in small groups were informed by participants' reflections on the panel presentations at the Forum and their own experiences with equity-based cocreation. Following the event, the authorship team inductively coded themes from the prototype descriptions and met to discuss the cross-cutting themes. These informed the design of an illustrated collective vision for Equity Based Co-Creation (EqCC).
RESULTS
RESULTS
Six prototypes were cocreated by each small group to illustrate their vision for EqCC. Within these, four cross-cutting themes were identified: (i) go to where people are, (ii) nurture relationships and creativity, (iii) reflect, replenish and grow, (iv) and promote thriving and transformation. These four themes are captured in the Collective EqCC Vision to guide a new era of inclusive excellence in cocreation activities.
PATIENT OR PUBLIC CONTRIBUTION
UNASSIGNED
Service users, caregivers, and people with lived experience were involved in leading the design of the CoPro2022 and co-led the event. This included activities at the event such as presenting, facilitating small and large group discussion, leading art-based activities, and reflecting with the team on the lessons learned. People with lived experience were involved in the analysis and knowledge sharing from this event. Several members of the research team (students and researchers) also identified as members of EDGs and were invited to draw from their personal and academic knowledge.
Types de publication
Journal Article
Langues
eng
Sous-ensembles de citation
IM
Pagination
e14041Subventions
Organisme : Social Sciences and Humanities Research Council
ID : 611-2021-0231
Organisme : Strategic Alignment Fund
Organisme : Strategic Excellence in Retention and Recruitment Funding from McMaster University
Informations de copyright
© 2024 The Authors. Health Expectations published by John Wiley & Sons Ltd.
Références
Nguyen T, Graham ID, Mrklas KJ, et al. How does integrated knowledge translation (IKT) compare to other collaborative research approaches to generating and translating knowledge? Learning from experts in the field. Health Res Policy Syst. 2020;18(1):35. doi:10.1186/s12961-020-0539-6
Bate P, Robert G. Bringing User Experience to Healthcare Improvement: The Concepts, Methods and Practices of Experience‐Based Design. Radcliffe Publishing; 2007.
Moll S, Wyndham‐West M, Mulvale G, et al. Are you really doing ‘codesign’? Critical reflections when working with vulnerable populations. BMJ Open. 2020;10(11):e038339. doi:10.1136/bmjopen-2020-038339
Blomkamp E. The promise of co‐design for public policy. Aust J Public Adm. 2018;77(4):729‐743. doi:10.1111/1467-8500.12310
Williams O, Sarre S, Papoulias SC, et al. Lost in the shadows: reflections on the dark side of co‐production. Health Res Policy Syst. 2020;18(1):43. doi:10.1186/s12961-020-00558-0
Slattery P, Saeri AK, Bragge P. Research co‐design in health: a rapid overview of reviews. Health Res Policy Syst. 2020;18(1):17. doi:10.1186/s12961-020-0528-9
Mulvale G, Miatello A, Green J, Tran M, Roussakis C, Mulvale A. A COMPASS for navigating relationships in co‐production processes involving vulnerable populations. Int J Public Adm. 2021;44(9):790‐802. doi:10.1080/01900692.2021.1903500
Mulvale G, Green J, Miatello A, Cassidy AE, Martens T. Finding harmony within dissonance: engaging patients, family/caregivers and service providers in research to fundamentally restructure relationships through integrative dynamics. Health Expect. 2021;24(suppl 1):147‐160. doi:10.1111/hex.13063
Mulvale G, Moll S, Miatello A, et al. Codesigning health and other public services with vulnerable and disadvantaged populations: insights from an international collaboration. Health Expect. 2019;22(3):284‐297. doi:10.1111/hex.12864
Dixon‐Woods M, Cavers D, Agarwal S, et al. Conducting a critical interpretive synthesis of the literature on access to healthcare by vulnerable groups. BMC Med Res Methodol. 2006;6:35. doi:10.1186/1471-2288-6-35
Grabovschi C, Loignon C, Fortin M. Mapping the concept of vulnerability related to health care disparities: a scoping review. BMC Health Serv Res. 2013;13:94. doi:10.1186/1472-6963-13-94
Mulvale G, Moll S, Miatello A, Murray‐Leung L, Rogerson K, Sassi RB. Co‐designing services for youth with mental health issues: novel elicitation approaches. Int J Qual Methods. 2019;18. doi:10.1177/1609406918816244
Micsinszki SK, Tanel NL, Kowal J, et al. Codesigning simulations and analyzing the process to ascertain principles of authentic and meaningful research engagement in childhood disability research. Res Involv Engagem. 2022;8(1):60. doi:10.1186/s40900-022-00398-y
Jamal S, Newbold KB. The promise of co‐design for improving transit service for older immigrants: development of a co‐design framework for Hamilton, Ontario. Urban Govern. 2023;3(1):83‐91. doi:10.1016/j.ugj.2023.01.002
Terkelsen AS, Wester CT, Gulis G, Jespersen J, Andersen PT. Co‐creation and co‐production of health promoting activities addressing older people—a scoping review. Int J Environ Res Public Health. 2022;19(20):13043. doi:10.3390/ijerph192013043
Buchanan F. How do patients attain equal status if they're seen as ‘nonexpert’? Healthy Debate. 2019. https://healthydebate.ca/2019/03/topic/patients-equal-status/
Gavin F. The risks of equating ‘lived experience’ with patient expertise. 2019. https://healthydebate.ca/2019/02/topic/patients-as-experts/
Rowland P, Forest P‐G, Vanstone M, Leslie M, Abelson J. Exploring meanings of expert and expertise in patient engagement activities: a qualitative analysis of a pan‐Canadian survey. SSM Qual Res Health. 2023;4:100342. doi:10.1016/j.ssmqr.2023.100342
Black A, Strain K, Wallsworth C, et al. What constitutes meaningful engagement for patients and families as partners on research teams? J Health Serv Res Policy. 2018;23(3):158‐167. doi:10.1177/1355819618762960
Gonzalez M, Phoenix M, Saxena S, et al. Strategies used to engage hard‐to‐reach populations in childhood disability research: a scoping review. Disabil Rehabil. 2021;43(19):2815‐2827. doi:10.1080/09638288.2020.1717649
Pozniak K, Buchanan F, Cross A, et al. Building a culture of engagement at a research centre for childhood disability. Res Involv Engagem. 2021;7(1):78. doi:10.1186/s40900-021-00319-5
Akerlof KL, Timm KMF, Chase A, et al. What does equitable co‐production entail? Three perspectives. Commun Sci. 2023;2(2). doi:10.1029/2022csj000021
Oliver K, Kothari A, Mays N. The dark side of coproduction: do the costs outweigh the benefits for health research? Health Res Policy Syst. 2019;17(1):33. doi:10.1186/s12961-019-0432-3
McMaster University. CoPro2022 3‐Day International Forum. McMaster University Co‐Design VP Hub. 2023. https://codesign.mcmaster.ca/copro-2022/copro-2022-3-day-symposium/
Mulvale G, Moll S, Phoenix M, et al. Co‐creating a new charter for equitable and inclusive co‐creation: insights from an international forum of academic and lived experience experts. BMJ Open. 2024;14(14):e078950. doi:10.1136/bmjopen-2023-078950
Micsinszki SK, Buettgen A, Mulvale G, et al. Creative processes in co‐designing a co‐design hub: towards system change in health and social services in collaboration with structurally vulnerable populations. Evid Pol. 2022;18(2):291‐310. doi:10.1332/174426421x16366319768599
Mulvale A, Miatello A, Hackett C, Mulvale G. Applying experience‐based co‐design with vulnerable populations: lessons from a systematic review of methods to involve patients, families and service providers in child and youth mental health service improvement. Patient Exp J. 2016;3(1):117‐129. doi:10.35680/2372-0247.1104
Sanders EBN, Stappers PJ. Probes, toolkits and prototypes: three approaches to making in codesigning. CoDesign. 2014;10(1):5‐14. doi:10.1080/15710882.2014.888183