Dataset Information

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

ABSTRACT:

Introduction

Resilience 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 analysis

This 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 dissemination

The 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.

SUBMITTER: Guise V

PROVIDER: S-EPMC8183273 | biostudies-literature |

REPOSITORIES: biostudies-literature

ACCESS DATA

Similar Datasets

Project description:Background: The European Patients' Academy on Therapeutic Innovation Switzerland (EUPATI CH) was established as an association in 2016 with the mission to improve patient empowerment in Switzerland, raise public awareness of EUPATI's education material, and foster multi-stakeholder partnerships in order to promote public involvement in all aspects of medicines research and development (R&D). In order to achieve its goal of improving patient involvement (PI) in all processes of medicines R&D in Switzerland and to obtain guidance and recommendations for future activities, EUPATI CH initiated a multi-stakeholder survey on PI experiences, hurdles, and best practices. The survey enabled EUPATI CH to obtain and analyze the views of various stakeholders and shape its workplan. Methods: Data collection occurred between January and July 2019 using a survey and semi-structured interviews with individual stakeholders from different groups. The online survey responses were analyzed using quantitative methods and the interviews were analyzed using qualitative methods. Results: The online survey was completed by 55 respondents (10%), and the semi-structured interviews were conducted with 14 stakeholders. Respondents to the online survey were patient representatives (45%), researchers from academia (25%), individuals from the pharmaceutical industry (9%), healthcare professionals (23%), and representatives from government agencies (6%). Some respondents were also members of EUPATI CH. Thirty-eight percent of respondents consider PI in Switzerland to be limited or absent. They identified the main barriers to PI as, first and foremost, a lack of funds and human resources (65%), followed by a lack of information and a lack of education on how to become a patient advocate (21%), a lack of collaboration with other stakeholders (16%), and a lack of adequate resources. Respondents' expectations of EUPATI CH's role in supporting PI were to provide education for active PI and improve networking and collaboration among stakeholders. Conclusions: EUPATI CH's multi-stakeholder research identified some of the difficulties in promoting PI in medicines R&D in Switzerland, in particular the complex collaboration among stakeholders and a lack of funds, human resources, and knowledge. To respond to these difficulties, EUPATI CH has begun preparing a basic training course for patients that is adapted to Switzerland.

Project description:IntroductionResilient healthcare (RHC) is an emerging area of theory and applied research to understand how healthcare organisations cope with the dynamic, variable and demanding environments in which they operate, based on insights from complexity and systems theory. Understanding adaptive capacity has been a focus of RHC studies. Previous studies clearly show why adaptations are necessary and document the successful adaptive actions taken by clinicians. To our knowledge, however, no studies have thus far compared RHC across different teams and countries. There are gaps in the research knowledge related to the multilevel nature of resilience across healthcare systems and the team-based nature of adaptive capacity.This cross-country comparative study therefore aims to add knowledge of how resilience is enabled in diverse healthcare systems by examining adaptive capacity in hospital teams in six countries. The study will identify how team, organisational and national healthcare system factors support or hinder the ability of teams to adapt to variability and change. Findings from this study are anticipated to provide insights to inform the design of RHC systems by considering how macro-level and meso-level structures support adaptive capacity at the micro-level, and to develop guidance for organisations and policymakers.Methods and analysisThe study will employ a multiple comparative case study design of teams nested within hospitals, in turn embedded within six countries: Australia, Japan, the Netherlands, Norway, Switzerland and the UK. The design will be based on the Adaptive Teams Framework placing adaptive teams at the centre of the healthcare system with layers of environmental, organisational and system level factors shaping adaptive capacity. In each of the six countries, a focused mapping of the macro-level features of the healthcare system will be undertaken by using documentary sources and interviews with key informants operating at the macro-level.A sampling framework will be developed to select two hospitals in each country to ensure variability based on size, location and teaching status. Four teams will be selected in each hospital-one each of a structural, hybrid, responsive and coordinating team. A total of eight teams will be studied in each country, creating a total sample of 48 teams. Data collection methods will be observations, interviews and document analysis. Within-case analysis will be conducted according to a standardised template using a combination of deductive and inductive qualitative coding, and cross-case analysis will be conducted drawing on the Qualitative Comparative Analysis framework.Ethics and disseminationThe overall Resilience in Healthcare research programme of which this study is a part has been granted ethical approval by the Norwegian Centre for Research Data (Ref. No. 8643334 and Ref. No. 478838). Ethical approval will also be sought in each country involved in the study according to their respective regulatory procedures. Country-specific reports of study outcomes will be produced for dissemination online. A collection of case study summaries will be made freely available, translated into multiple languages. Brief policy communications will be produced to inform policymakers and regulators about the study results and to facilitate translation into practice. Academic dissemination will occur through publication in journals specialising in health services research. Findings will be presented at academic, policy and practitioner conferences, including the annual RHC Network meeting and other healthcare quality and safety conferences. Presentations at practitioner and academic conferences will include workshops to translate the findings into practice and influence quality and safety programmes internationally.

Project description:IntroductionAs the world continues to grapple with the COVID-19 pandemic, emerging evidence suggests that individuals from ethnic minority backgrounds may be disproportionately affected. The United Kingdom Research study into Ethnicity And COVID-19 outcomes in Healthcare workers (UK-REACH) project has been initiated to generate rapid evidence on whether and why ethnicity affects COVID-19 diagnosis and clinical outcomes in healthcare workers (HCWs) in the UK, through five interlinked work packages/work streams, three of which form the basis of this protocol. The ethico-legal work (Work Package 3) aims to understand and address legal, ethical and acceptability issues around big data research; the HCWs' experiences study (Work Package 4) explores their work and personal experiences, perceptions of risk, support and coping mechanisms; the stakeholder engagement work (Work Package 5) aims to provide feedback and support with the formulation and dissemination of the project recommendations.Methods and analysisWork Package 3 has two different research strands: (A) desk-based doctrinal research; and (B) empirical qualitative research with key opinion leaders. For the empirical research, in-depth interviews will be conducted digitally and recorded with participants' permission. Recordings will be transcribed, coded and analysed using thematic analysis. In Work Package 4, online in-depth interviews and focus groups will be conducted with approximately 150 HCWs, from across the UK, and these will be recorded with participants' consent. The recordings will be transcribed and coded and data will be analysed using thematic analysis. Work Package 5 will achieve its objectives through regular group meetings and in-group discussions.Ethics and disseminationEthical approval has been received from the London-Brighton & Sussex Research Ethics Committee of the Health Research Authority (Ref No 20/HRA/4718). Results of the study will be published in open-access journals, and disseminated through conference presentations, project website, stakeholder organisations, media and scientific advisory groups.Trial registration numberISRCTN11811602.

Project description:BackgroundThe COVID-19 pandemic has presented many multi-faceted challenges to the maintenance of service quality and safety, highlighting the need for resilient and responsive healthcare systems more than ever before. This review examined empirical investigations of Resilient Health Care (RHC) in response to the COVID-19 pandemic with the aim to: identify key areas of research; synthesise findings on capacities that develop RHC across system levels (micro, meso, macro); and identify reported adverse consequences of the effort of maintaining system performance on system agents (healthcare workers, patients).MethodsThree academic databases were searched (Medline, EMBASE, Scopus) from 1st January 2020 to 30th August 2022 using keywords pertaining to: systems resilience and related concepts; healthcare and healthcare settings; and COVID-19. Capacities that developed and enhanced systems resilience were synthesised using a hybrid inductive-deductive thematic analysis.ResultsFifty publications were included in this review. Consistent with previous research, studies from high-income countries and the use of qualitative methods within the context of hospitals, dominated the included studies. However, promising developments have been made, with an emergence of studies conducted at the macro-system level, including the development of quantitative tools and indicator-based modelling approaches, and the increased involvement of low- and middle-income countries in research (LMIC). Concordant with previous research, eight key resilience capacities were identified that can support, develop or enhance resilient performance, namely: structure, alignment, coordination, learning, involvement, risk awareness, leadership, and communication. The need for healthcare workers to constantly learn and make adaptations, however, had potentially adverse physical and emotional consequences for healthcare workers, in addition to adverse effects on routine patient care.ConclusionsThis review identified an upsurge in new empirical studies on health system resilience associated with COVID-19. The pandemic provided a unique opportunity to examine RHC in practice, and uncovered emerging new evidence on RHC theory and system factors that contribute to resilient performance at micro, meso and macro levels. These findings will enable leaders and other stakeholders to strengthen health system resilience when responding to future challenges and unexpected events.

Project description:BackgroundOver the past decades, there has been a growing international interest in user involvement in healthcare research. However, evidence on the management and impact of patient and public involvement in Nordic healthcare research remains limited.ObjectiveThe aim was to explore and delineate the current state, practice, and impact of patient and public involvement in healthcare research across different areas of healthcare and patient populations in the Nordic countries.MethodsWe conducted a scoping review using nine scientific databases and gray literature from 1992-2023. Sources were categorized as empirical or non-empirical. We used the Guidance for Reporting Involvement of Patients and the Public Short Form 2 checklist for reporting of patient and public involvement in healthcare research and the Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews.ResultsA total of 56 publications were included, consisting of 39 empirical and 17 non-empirical sources. Gray literature varied among countries and institutions encompassing different types of documents. We found an increase in the number of publications on patient and public involvement in Nordic healthcare research. This was evidenced by the growing number of references and institutional initiatives intended at involving the public, indicating the increasing emphasis on patient and public involvement in Nordic healthcare research. The terminology used to describe patient and public involvement varied over time. However, there has been a gradual narrowing down of terms as the concept of PPI has become more integrated into research practices, particularly with the involvement of funding agencies.ConclusionThe utilization of patient and public involvement in Nordic healthcare research has substantially increased, proliferated, and gained widespread acceptance across diverse healthcare domains. The variety of approaches challenged our scoping review in terms of systematic description and impact. Patient and public involvement was applied in one or more research stages using different methodologies and terms. International agreement on terms and definitions is needed for reliable interpretation of the use of patient and public involvement in Nordic healthcare research.

Project description:IntroductionSince early 2020, the COVID-19 pandemic has challenged societies and revealed the built-in fragility and dependencies in complex adaptive systems, such as healthcare. The pandemic has placed healthcare providers and systems under unprecedented amounts of strain with potential consequences that have not yet been fully elucidated. This multilevel project aims to explore resilient performance with the purpose of improving the understanding of how healthcare has adapted during the pandemic's rampage, the processes involved and the consequences on working conditions, ethics and patient safety.MethodsAn emerging explorative multilevel design based on grounded theory methodology is applied. Open and theoretical sampling is performed. Empirical data are gathered over time from written narratives and qualitative interviews with staff with different positions in healthcare organisations in two Swedish regions. The participants' first-person stories are complemented with data from the healthcare organisations' internal documents and national and international official documents.AnalysisExperiences and expressions of resilient performance at different system levels and times, existing influencing risk and success factors at the microlevels, mesolevels and macrolevels and inter-relationships and consequences in different healthcare contexts, are explored using constant comparative analysis. Finally, the data are complemented with the current literature to develop a substantive theory of resilient performance during the pandemic.Ethics and disseminationThis project is ethically approved and recognises the ongoing strain on the healthcare system when gathering data. The ongoing pandemic provides unique possibilities to study system-wide adaptive capacity across different system levels and times, which can create an important basis for designing interventions focusing on preparedness to manage current and future challenges in healthcare. Feedback is provided to the settings to enable pressing improvements. The findings will also be disseminated through scientific journals and conferences.

Project description:INTRODUCTION:Bringing together continuous quality improvement (CQI) data from multiple health services offers opportunities to identify common improvement priorities and to develop interventions at various system levels to achieve large-scale improvement in care. An important principle of CQI is practitioner participation in interpreting data and planning evidence-based change. This study will contribute knowledge about engaging diverse stakeholders in collaborative and theoretically informed processes to identify and address priority evidence-practice gaps in care delivery. This paper describes a developmental evaluation to support and refine a novel interactive dissemination project using aggregated CQI data from Aboriginal and Torres Strait Islander primary healthcare centres in Australia. The project aims to effect multilevel system improvement in Aboriginal and Torres Strait Islander primary healthcare. METHODS AND ANALYSIS:Data will be gathered using document analysis, online surveys, interviews with participants and iterative analytical processes with the research team. These methods will enable real-time feedback to guide refinements to the design, reports, tools and processes as the interactive dissemination project is implemented. Qualitative data from interviews and surveys will be analysed and interpreted to provide in-depth understanding of factors that influence engagement and stakeholder perspectives about use of the aggregated data and generated improvement strategies. Sources of data will be triangulated to build up a comprehensive, contextualised perspective and integrated understanding of the project's development, implementation and findings. ETHICS AND DISSEMINATION:The Human Research Ethics Committee (HREC) of the Northern Territory Department of Health and Menzies School of Health Research (Project 2015-2329), the Central Australian HREC (Project 15-288) and the Charles Darwin University HREC (Project H15030) approved the study. Dissemination will include articles in peer-reviewed journals, policy and research briefs. Results will be presented at conferences and quality improvement network meetings. Researchers, clinicians, policymakers and managers developing evidence-based system and policy interventions should benefit from this research.

Project description:Introduction/objectivesThe engagement of patients and other stakeholders is a critical element in the design of patient-centered outcomes research studies. However, methodology for scalable engagement in research management particularly activities such as operationalization of principles and setting of priorities is not well-developed. The objective of this study is to describe a novel approach for scalable stakeholder engagement in research aligned with the Patient-Centered Outcomes Research Institute (PCORI) engagement principles, which was evaluated in a national clinical data research network.Materials and methodsPatient, patient advocate, clinician, and researcher stakeholders were recruited from clinical sites, as well as social media sites related to the 3 conditions of focus, heart failure, obesity, and Kawasaki disease. The engagement strategy was designed, implemented, and mapped to the PCORI engagement principles. Evaluation included internal assessment and quantitative measures of online engagement.ResultsWe operationalized the PCORI principles with 12 stakeholder engagement strategies and convened stakeholder advisory boards and online research prioritization panels to determine research priorities in a rigorous, deliberative process. A total of 46 advisors (20 patients) and 339 panelists (159 patients) actively participated. There were not significant differences between patients and clinicians in level of online engagement. Nonetheless, while patients reported a slightly greater challenge with following online discussion, they overall had a more favorable opinion about use of the online format.Discussion/conclusionAn efficient way to engage large numbers of representative stakeholders in research is a necessary first step to assure the public of trustworthy use of data networks for health research. This paper describes a comprehensive approach to engagement in patient-centered outcomes research management that informs ongoing development of rigorous methodologies in this area.

Project description:BackgroundWorkplace bullying and violence (WBV) are well-documented issues in the midwifery profession. Negative workplace culture, conflict, and bullying are the most common forms of workplace violence experienced by midwives. Workplace violence increases the risk of midwives experiencing burnout, compassion fatigue, psychological trauma, poor mental health, absenteeism, loss of passion for the midwifery profession, job dissatisfaction, and poor job retention. Midwifery students describe workplace violence in the form of physical, emotional, or verbal abuse, and bullying. Therefore, there is a justification to develop conflict resolution strategies and resilience in midwifery students prior to graduation.ObjectiveOur aim is to develop and facilitate a bespoke education program for South Australian midwifery students to enable them to develop skills in conflict resolution, build resilience, and identify self-care strategies.MethodsThis study will undertake a preparatory phase summarizing the body of literature on midwifery students' knowledge, understanding, and experiences of WBV. Following this, a 3-phase sequential mixed methods research design study will be undertaken. In Phase 1, quantitative data will be collected via a semistructured questionnaire and a validated conflict measurement tool, before and after attending an education workshop, and will be analyzed using descriptive and inferential statistics. Results from Phase 1 will inform and guide the development of an interview schedule for Phase 2. In Phase 2, qualitative data will be gathered by facilitating one-to-one interviews and a thematic analysis will be undertaken to gain a deeper understanding of midwifery students' experiences of WBV. In Phase 3, data integration using triangulation will be undertaken and meta-inferences will be developed via the integration of results and findings from Phases 1 and 2.ResultsThe preparatory phase will commence in October 2021. Phase 1 will commence in 2022 with analysis of pre- and posteducation results anticipated to be completed by December 2022. Phase 2 will be developed from findings of the preparatory phase and results of Phase 1. An interpretation of verbatim interview transcripts is estimated to be undertaken by April 2023. Phase 3 of the study is expected to commence in May 2023, and this will involve the analysis of collective evidence gathered from Phases 1 and 2. The anticipated completion date for the study is December 2023.ConclusionsThe outcomes of this research will provide insights into the prevalence and impact of WBV experienced by midwifery students. The findings of the research will report on levels of knowledge, skills, and confidence, and will assess the impact of a bespoke conflict resolution and resilience education workshop for midwifery students in managing WBV.International registered report identifier (irrid)PRR1-10.2196/35558.