Emergency care (from ambulance to emergency room) is focused on somatic care: fixing the body. When a patient with mental dysregulation who experiences ‘disproportionate feelings like fear, anger, sadness or confusion, possibly with associated behaviours’ (Van de Glind et al. 2023) does not get appropriate attention, this can result in the disruption of treatment and even psychological trauma upon trauma. To improve the emergency care process, the authors of this paper - health researchers and design researchers engaged in a project based on the experience-based co-design (EBCD) approach (Donetto et al. 2015; Bate and Robert 2007). EBCD is a method used to design better experiences in healthcare settings, in cooperation with (former) patients and healthcare professionals. The process of EBCD involves partnerships between stakeholders and the discovery and sensemaking of experiences through specialized methods to gain an understanding of the interface between user and service, to design new experiences (Bate and Robert 2007, 31). There is, however, an interesting challenge in bringing patients and care professionals together. In emergency care, patients depend greatly on their healthcare providers. The patients in this study had existing mental vulnerabilities and may have been traumatized by previous visits. We needed to enable these stakeholders to be equal partners with ownership and power, one of the characteristics of co-design in EBCD (Donetto et al. 2015). In this paper, we describe how we adapted and applied the EBCD method, with a focus on creating equal partnerships. We also reflect on the extent of our success and the diBiculties we encountered in attaining this objective.
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Introduction: The implementation of oncology care pathways that standardize organizational procedures has improved cancer care in recent years. However, the involvement of “authentic” patients and caregivers in quality improvement of these predetermined pathways is in its infancy, especially the scholarly reflection on this process. We, therefore, aim to explore the multidisciplinary challenges both in practice, when cancer patients, their caregivers, and a multidisciplinary team of professionals work together on quality improvement, as well as in our research team, in which a social scientist, health care professionals, health care researchers, and experience experts design a research project together. Methods and design: Experience-based co-design will be used to involve cancer patients and their caregivers in a qualitative research design. In-depth open discovery interviews with 12 colorectal cancer patients, 12 breast cancer patients, and seven patients with cancer-associated thrombosis and their caregivers, and focus group discussions with professionals from various disciplines will be conducted. During the subsequent prioritization events and various co-design quality improvement meetings, observational field notes will be made on the multidisciplinary challenges these participants face in the process of co-design, and evaluation interviews will be done afterwards. Similar data will be collected during the monthly meetings of our multidisciplinary research team. The data will be analyzed according to the constant comparative method. Discussion: This study may facilitate quality improvement programs in oncologic care pathways, by increasing our real-world knowledge about the challenges of involving “experience experts” together with a team of multidisciplinary professionals in the implementation process of quality improvement. Such co-creation might be challenging due to the traditional paternalistic relationship, actual disease-/treatment-related constraints, and a lack of shared language and culture between patients, caregivers, and professionals and between professionals from various disciplines. These challenges have to be met in order to establish equality, respect, team spirit, and eventual meaningful participation.
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Background: Many intervention development projects fail to bridge the gap from basic research to clinical practice. Instead of theory-based approaches to intervention development, co-design prioritizes the end users’ perspective as well as continuous collaboration between stakeholders, designers, and researchers throughout the project. This alternative approach to the development of interventions is expected to promote the adaptation to existing treatment activities and to be responsive to the requirements of end users. Objective: The first objective was to provide an overview of all activities that were employed during the course of a research project to develop a relapse prevention intervention for interdisciplinary pain treatment programs. The second objective was to examine how co-design may contribute to stakeholder involvement, generation of relevant insights and ideas, and incorporation of stakeholder input into the intervention design. Methods: We performed an embedded single case study and used the double diamond model to describe the process of intervention development. Using all available data sources, we also performed deductive content analysis to reflect on this process. Results: By critically reviewing the value and function of a co-design project with respect to idea generation, stakeholder involvement, and incorporation of stakeholder input into the intervention design, we demonstrated how co-design shaped the transition from ideas, via concepts, to a prototype for a relapse prevention intervention. Conclusions: Structural use of co-design throughout the project resulted in many different participating stakeholders and stimulating design activities. As a consequence, the majority of the components of the final prototype can be traced back to the information that stakeholders provided during the project. Although this illustrates how co-design facilitates the integration of contextual information into the intervention design, further experimental testing is required to evaluate to what extent this approach ultimately leads to improved usability as well as patient outcomes in the context of clinical practice.
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De zorg voor psychisch ontregelde patiënten die somatische spoedzorg nodig hebben is in de praktijk vaak suboptimaal, omdat de primaire focus van die spoedzorg vooral op somatische klachten ligt. Hierdoor krijgt deze kwetsbare groep patiënten niet altijd de zorg die zij nodig hebben, waardoor behandeling van psychische klachten onnodig wordt uitgesteld en de kans op escalaties toeneemt.
De zorg voor psychisch ontregelde patiënten die somatische spoedzorg nodig hebben is in de praktijk vaak suboptimaal, omdat de primaire focus van die spoedzorg vooral op somatische klachten ligt. Hierdoor krijgt deze kwetsbare groep patiënten niet altijd de zorg die zij nodig hebben, waardoor behandeling van psychische klachten onnodig wordt uitgesteld en de kans op escalaties toeneemt.Doel Binnen dit project wordt onderzocht wat er nodig is om de spoedzorg voor psychisch ontregelde patiënten beter te laten aansluiten op de behoeften en ervaringen van de patiënt, hun naasten en de zorgprofessionals. Resultaten Inzicht in de ervaringen en behoeften van psychisch ontregelde patiënten, hun naasten en zorgprofessionals met betrekking tot de inhoud en organisatie van de spoedzorg tijdens het traject naar (ambulancevervoer) en het verblijf op de spoedeisende hulp. Op basis van deze inzichten wordt samen met patiënten, hun naasten en zorgprofessionals een toolbox ontwikkeld met de ingrediënten die ervoor zorgen dat de spoedzorg beter aansluit bij de specifieke behoeften van deze patiënten (en hun naasten). Looptijd 01 december 2021 - 31 december 2023 Aanpak De onderzoeksmethoden binnen dit project zijn gebaseerd op de Experience-Based Co-Design (EBCD) aanpak, waarbij door middel van kwalitatieve onderzoeksmethoden inzicht wordt verkregen in de context en het perspectief van zowel patiënten als zorgprofessionals. Op basis daarvan worden, in co-creatie met patiënten en zorgprofessionals praktische oplossingen ontwikkeld. Financiering Dit project wordt gefinancierd met een SIA RAAK Publiek-subsidie, registratienummer 08.029.
