Patient and stakeholder involvement in resilient healthcare: an interactive research study protocol

Abstract

IntroductionResilience in healthcare (RiH) is understood as the capacity of the healthcare system to adapt to challenges and changes at different system levels, to maintain high-quality care. Adaptive capacity is founded in the knowledge, skills and experiences of the people in the system, including patients, family or next of kin, healthcare providers, managers and regulators. In order to learn from and support useful adaptations, research is needed to better understand adaptive capacity and the nature and context of adaptations. This includes research on the actors involved in creating resilient healthcare, and how and in what circumstances different groups of patients and other key healthcare stakeholders enact adaptations that contribute to resilience across all levels of the healthcare system.Methods and analysisThis 5-year study applies an interactive design in a two-phased approach to explore and conceptualise patient and stakeholder involvement in resilient healthcare. Study phase 1 is exploratory and will use such data collection methods as literature review, document analysis, interviews and focus groups. Study phase 2 will use a participatory design approach to develop, test and evaluate a conceptual model for patient and stakeholder involvement in RiH. The study will involve patients and other key stakeholders as active participants throughout the research process.Ethics and disseminationThe RiH research programme of which this study is a part is approved by the Norwegian Centre for Research Data (No. 864334). Findings will be disseminated through scientific articles, presentations at national and international conferences, through social media and popular press, and by direct engagement with the public, including patient and stakeholder representatives.

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“…The findings of this review support the “scaffolding” role concept of patients and carers’ interaction with the healthcare system. 9 In addition, this review links to emerging literature that patient and caregiver involvement is crucial to support resilience in healthcare systems (see the study by Guise et al 37 ). Cancer patients are a unique patient population with distinct experiences of multiple care transitions (chemotherapy, radiotherapy, outpatient services, home-based care, to name a few) 4 and are a novel representation of how patients safeguard themselves and navigate fluctuating resilience in healthcare systems.…”

Capacities for resilience in healthcare; a qualitative study across different healthcare contexts

“…Moreover, Involvement naturally relies on a need for collaboration between different actors. Existing literature also emphasizes involvement as important for resilience [ 35 ]. Kruk et al [ 2 ] describes involvement of different actors, and Barasa et al [ 13 ] highlights social networks, all pointing to the need for involving patients, family, and other healthcare system stakeholders.…”

Developing Methods to Support Collaborative Learning and Co-creation of Resilient Healthcare—Tips for Success and Lessons Learned From a Norwegian Hospital Cancer Care Study

“…We hold that other service providers could take advantage of this approach in their effort to promote resilient performance and co-design services with next of kin, healthcare professionals, and managers. All of these stakeholders are playing a key role in the healthcare service provision, 12,50 and next of kin in particular in co-creating resilience as they support resilience potentials and complement the healthcare professionals at times of peak demand, low staffing, and care transitions. 1,5 Thinking in practical terms of how such a consensus process could take place in, for example, a hospital or nursing home setting, our tip for service providers is to treat the process as integral to ongoing improvement work.…”