The impact of COVID-19 on patient engagement with primary healthcare: lessons from the saudi primary care setting

BACKGROUND: There have been significant achievements in controlling COVID-19 in Saudi Arabia (SA), but as in most healthcare settings worldwide, health services have been seriously disrupted. Also, with pandemic control measures such as lockdowns and curfews, and innovations such as digital health services, the delivery of primary healthcare (PHC) services has dramatically changed. However, little is known about patients' experiences of PHCs during the pandemic, their views on the pandemic-related interventions in SA, and patient views on impact on their medical care. METHODS: Qualitative semi-structured online interviews were conducted for twenty-four Saudi patients across SA aged 18 and above who were diverse in terms of age, gender, education and health status. Data were analysed using thematic analysis yielding four major themes as an impact of COVID-19 on patient engagement with PHCs. RESULTS: The COVID-19 pandemic has had profound mixed impacts on patient engagement with PHC in SA. Fear of infection or of breaking lockdown rules has negatively impacted the utilisation of PHCs but positively changed patients' attitudes towards seeking medical help for self-limiting conditions. The pandemic has also negatively impacted routine preventive care at PHCs, especially for patients with long-term health conditions. The mandatory use of some digital health services in SA that existed pre-pandemic has provided patients with a perception of better care during the pandemic. Yet, a lack of awareness of optional digital health services, such as virtual clinics, hindered optimal use. Despite pandemic-related disruption of patient engagement with PHCs, the reduced waiting time in PHC centres and healthcare providers' communication and empathy during the pandemic contributed to patients' perceptions of better care compared to pre-pandemic. However, patients living outside the main cities in SA perceived care quality as less good during the pandemic compared to PHCs in the main cities in SA. CONCLUSION: The lessons learned from patients' experiences and views of PHCs during the pandemic were beneficial in promoting patient engagement with PHCs. The digital health services mandated in response to the pandemic have accelerated digital health innovation in SA and allowed patients to recognise the benefits of digital health. This has huge potential for increasing continuous patient engagement with PHCs. Yet, patients' experiences of digital health services during the pandemic are essential for informing appropriate implementation and utilisation of e-health services. Patients' positive experiences of PHCs during the pandemic, such as the reduction in waiting times and the perception of improved healthcare providers' professionalism, communication and empathy, can be built on to sustain engagement with PHC services. These findings might have significance for clinicians and policymakers to support patient engagement with PHCs, particularly in healthcare systems like SA that struggle with the overuse of emergency departments (EDs) for PHC-treatable conditions

Defining Coordinated Care for People with Rare Conditions: A Scoping Review.

INTRODUCTION: To coordinate care effectively for rare conditions, we need to understand what coordinated care means. This review aimed to define coordinated care and identify components of coordinated care within the context of rare diseases; by drawing on evidence from chronic conditions. METHODS: A systematic scoping review. We included reviews that reported or defined and outlined components of coordinated care for chronic or rare conditions. Thematic analysis was used to develop a definition and identify components or care coordination. Stakeholder consultations (three focus groups with patients, carers and healthcare professionals with experience of rare conditions) were held to further explore the relevance of review findings for rare conditions. RESULTS: We included 154 reviews (n = 139 specific to common chronic conditions, n = 3 specific to rare conditions, n = 12 both common/rare conditions). A definition of coordination was developed. Components were identified and categorised by those that: may need to be coordinated, inform how to coordinate care, have multiple roles, or that contextualise coordination. CONCLUSIONS: Coordinated care is multi-faceted and has both generic and context-specific components. Findings outline many ways in which care may be coordinated for both rare and common chronic conditions. Findings can help to develop and eventually test different ways of coordinating care for people with rare and common chronic conditions

Inter-organisational collaboration enabling care delivery in a specialist cancer surgery provider network: A qualitative study

Objective: To explore the processes, challenges and strategies used to govern and maintain inter-organisational collaboration between professionals in a provider network in London, United Kingdom, which implemented major system change focused on the centralisation of specialist cancer surgery. Methods: We used a qualitative design involving interviews with stakeholders (n = 117), non-participant observations (n = 163) and documentary analysis (n = 100). We drew on an existing model of collaboration in healthcare organisations and expanded this framework by applying it to the analysis of collaboration in the context of major system change. Results: Network provider organisations established shared goals, maintained central figures who could create and sustain collaboration, and promoted distributed forms of leadership. Still, organisations continued to encounter barriers or challenges in relation to developing opportunities for mutual acquaintanceship across all professional groups; the active sharing of knowledge, expertise and good practice across the network; the fostering of trust; and creation of information exchange infrastructures fit for collaborative purposes. Conclusion: Collaborative relationships changed over time, becoming stronger post-implementation in some areas, but continued to be negotiated where resistance to the centralisation remained. Future research should explore the sustainability of these relationships and further unpack how hierarchies and power relationships shape inter-organisational collaboration

How are patients with rare diseases and their carers in the UK impacted by the way care is coordinated? An exploratory qualitative interview study.

BACKGROUND: Care coordination is considered important for patients with rare conditions, yet research addressing the impact of care coordination is limited. This study aimed to explore how care coordination (or lack of) impacts on patients and carers. Semi-structured interviews were conducted with 15 patients and carers/parents in the UK, representing a range of rare conditions (including undiagnosed conditions). Transcripts were analysed thematically in an iterative process. RESULTS: Participants described a range of experiences and views in relation to care coordination. Reports of uncoordinated care emerged: appointments were uncoordinated, communication between key stakeholders was ineffective, patients and carers were required to coordinate their own care, and care was not coordinated to meet the changing needs of patients in different scenarios. As a result, participants experienced an additional burden and barriers/delays to accessing care. The impacts described by patients and carers, either attributed to or exacerbated by uncoordinated care, included: impact on physical health (including fatigue), financial impact (including loss of earnings and travel costs), and psychosocial impact (including disruption to school, work and emotional burden). Overall data highlight the importance of flexible care, which meets individual needs throughout patients'/carers' journeys. Specifically, study participants suggested that the impacts may be addressed by: having support from a professional to coordinate care, changing the approach of clinics and appointments (where they take place, which professionals/services are available and how they are scheduled), and improving communication through the use of technology, care plans, accessible points of contact and multi-disciplinary team working. CONCLUSION: This study provides further evidence of impacts of uncoordinated care; these may be complex and influenced by a number of factors. Approaches to coordination which improve access to care and lessen the time and burden placed on patients and carers may be particularly beneficial. Findings should influence future service developments (and the evaluation of such developments). This will be achieved, in the first instance, by informing the CONCORD Study in the UK

Variation in quality of acute stroke care by day and time of admission: prospective cohort study of weekday and weekend centralised hyperacute stroke unit care and non-centralised services.

OBJECTIVE: To investigate variations in quality of acute stroke care and outcomes by day and time of admission in London hyperacute stroke units compared with the rest of England. DESIGN: Prospective cohort study using anonymised patient-level data from the Sentinel Stroke National Audit Programme. SETTING: Acute stroke services in London hyperacute stroke units and the rest of England. PARTICIPANTS: 68 239 patients with a primary diagnosis of stroke admitted between January and December 2014. INTERVENTIONS: Hub-and-spoke model for care of suspected acute stroke patients in London with performance standards designed to deliver uniform access to high-quality hyperacute stroke unit care across the week. MAIN OUTCOME MEASURES: 16 indicators of quality of acute stroke care, mortality at 3 days after admission to the hospital, disability at the end of the inpatient spell, length of stay. RESULTS: There was no variation in quality of care by day and time of admission to the hospital across the week in terms of stroke nursing assessment, brain scanning and thrombolysis in London hyperacute stroke units, nor was there variation in 3-day mortality or disability at hospital discharge (all p values>0.05). Other quality of care measures significantly varied by day and time of admission across the week in London (all p values0.05). CONCLUSIONS: The London hyperacute stroke unit model achieved performance standards for 'front door' stroke care across the week. The same benefits were not achieved by other models of care in the rest of England. There was no weekend effect for mortality in London or the rest of the England. Other aspects of care were not constant across the week in London hyperacute stroke units, indicating some performance standards were perceived to be more important than others

Prehospital video triage of potential stroke patients in North Central London and East Kent: rapid mixed-methods service evaluation

Background In response to COVID-19, alongside other service changes, North Central London and East Kent implemented prehospital video triage: this involved stroke and ambulance clinicians communicating over FaceTime (Apple Inc., Cupertino, CA, USA) to assess suspected stroke patients while still on scene. Objective To evaluate the implementation, experience and impact of prehospital video triage in North Central London and East Kent. Design A rapid mixed-methods service evaluation (July 2020 to September 2021) using the following methods. (1) Evidence reviews: scoping review (15 reviews included) and rapid systematic review (47 papers included) on prehospital video triage for stroke, covering usability (audio-visual and signal quality); acceptability (whether or not clinicians want to use it); impact (on outcomes, safety, experience and cost-effectiveness); and factors influencing implementation. (2) Clinician views of prehospital video triage in North Central London and East Kent, covering usability, acceptability, patient safety and implementation: qualitative analysis of interviews with ambulance and stroke clinicians (n = 27), observations (n = 12) and documents (n = 23); a survey of ambulance clinicians (n = 233). (3) Impact on safety and quality: analysis of local ambulance conveyance times (n = 1400; April to September 2020). Analysis of national stroke audit data on ambulance conveyance and stroke unit delivery of clinical interventions in North Central London, East Kent and the rest of England (n = 137,650; July 2018 to December 2020). Results (1) Evidence: limited but growing, and sparse in UK settings. Prehospital video triage can be usable and acceptable, requiring clear network connection and audio-visual signal, clinician training and communication. Key knowledge gaps included impact on patient conveyance, patient outcomes and cost-effectiveness. (2) Clinician views. Usability – relied on stable Wi-Fi and audio-visual signals, and back-up processes for when signals failed. Clinicians described training as important for confidence in using prehospital video triage services, noting potential for ‘refresher’ courses and joint training events. Ambulance clinicians preferred more active training, as used in North Central London. Acceptability – most clinicians felt that prehospital video triage improved on previous processes and wanted it to continue or expand. Ambulance clinicians reported increased confidence in decisions. Stroke clinicians found doing assessments alongside their standard duties a source of pressure. Safety – clinical leaders monitored and managed potential patient safety issues; clinicians felt strongly that services were safe. Implementation – several factors enabled prehospital video triage at a system level (e.g. COVID-19) and more locally (e.g. facilitative governance, receptive clinicians). Clinical leaders reached across and beyond their organisations to engage clinicians, senior managers and the wider system. (3) Impact on safety and quality: we found no evidence of increased times from symptom onset to arrival at services or of stroke clinical interventions reducing in studied areas. We found several significant improvements relative to the rest of England (possibly resulting from other service changes). Limitations We could not interview patients and carers. Ambulance data had no historic or regional comparators. Stroke audit data were not at patient level. Several safety issues were not collected routinely. Our survey used a convenience sample. Conclusions Prehospital video triage was perceived as usable, acceptable and safe in both areas. Future research Qualitative research with patients, carers and other stakeholders and quantitative analysis of patient-level data on care delivery, outcomes and cost-effectiveness, using national controls. Focus on sustainability and roll-out of services. Study registration This study is registered as PROSPERO CRD42021254209. Funding This project was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme and will be published in full in Health and Social Care Delivery Research; Vol. 10, No. 26. See the NIHR Journals Library website for further project information

“Attending to History” in Major System Change in Healthcare in England: Specialist Cancer Surgery Service Reconfiguration

BACKGROUND: The reconfiguration of specialist hospital services, with service provision concentrated in a reduced number of sites, is one example of major system change (MSC) for which there is evidence of improved patient outcomes. This paper explores the reconfiguration of specialist oesophago-gastric (OG) cancer surgery services in a large urban area of England (Greater Manchester, GM), with a focus on the role of history in this change process and how reconfiguration was achieved after previous failed attempts. METHODS: This study draws on qualitative research from a mixed-methods evaluation of the reconfiguration of specialist cancer surgery services in GM. Forty-six interviews with relevant stakeholders were carried out, along with ~160 hours of observations at meetings and the acquisition of ~300 pertinent documents. Thematic analysis using deductive and inductive approaches was undertaken, guided by a framework of 'simple rules' for MSC. RESULTS: Through an awareness of, and attention to, history, leaders developed a change process which took into account previous unsuccessful reconfiguration attempts, enabling them to reduce the impact of potentially challenging issues. Interviewees described attending to issues involving competition between provider sites, change leadership, engagement with stakeholders, and the need for a process of change resilient to challenge. CONCLUSION: Recognition of, and response to, history, using a range of perspectives, enabled this reconfiguration. Particularly important was the way in which history influenced and informed other aspects of the change process and the influence of stakeholder power. This study provides further learning about MSC and the need for a range of perspectives to enable understanding. It shows how learning from history can be used to enable successful change

What does it take to provide clinical interventions with temporal consistency? A qualitative study of London hyperacute stroke units.

OBJECTIVES: Seven-day working in hospitals is a current priority of international health research and policy. Previous research has shown variability in delivering evidence-based clinical interventions across different times of day and week. We aimed to identify factors influencing such variations in London hyperacute stroke units (HASUs). DESIGN: Interview and observation study to explain patterns of variation in delivery and outcomes of care described in a quantitative partner paper (Melnychuk et al). SETTING: Eight HASUs in London. PARTICIPANTS: We interviewed HASU staff (n=76), including doctors, nurses, therapists and administrators. We also conducted non-participant observations of delivery of care at different times of the day and week (n=45; ~102 hours). We analysed the data for thematic content relating to the ability of staff to provide evidence-based interventions consistently at different times of the day and week. RESULTS: Staff were able to deliver 'front door' interventions consistently by taking on additional responsibilities out of hours (eg, deciding eligibility for thrombolysis); creating continuities between day and night (through, eg, governance processes and staggering rotas); building trusting relationships with, eg, Radiology and Emergency Departments and staff prioritisation of 'front door' interventions. Variations by time of day resulted from reduced staffing in HASUs and elsewhere in hospitals in the evenings and at the weekend. Variations by day of week (eg, weekend effect) resulted from lack of therapy input and difficulties repatriating patients at weekends, and associated increases in pressure on Fridays and Mondays. CONCLUSIONS: Evidence-based service standards can facilitate 7-day working in acute stroke services. Standards should ensure that the capacity and capabilities required for 'front door' interventions are available 24/7, while other services, for example, therapies are available every day of the week. The impact of standards is influenced by interdependencies between HASUs, other hospital services and social services

Development of models of care coordination for rare conditions: a qualitative study.

INTRODUCTION: Improving care coordination for people with rare conditions may help to reduce burden on patients and carers and improve the care that patients receive. We recently developed a taxonomy of different ways of coordinating care for rare conditions. It is not yet known which models of care coordination are appropriate in different situations. This study aimed to: (1) explore what types of care coordination may be appropriate in different situations, and (2) use these findings to develop hypothetical models of care coordination for rare conditions. METHODS: To explore appropriateness of different types of care coordination, we conducted interviews (n = 30), four focus groups (n = 22) and two workshops (n = 27) with patients, carers, healthcare professionals, commissioners, and charity representatives. Participants were asked about preferences, benefits and challenges, and the factors influencing coordination. Thematic analysis was used to develop hypothetical models of care coordination. Models were refined following feedback from workshop participants. RESULTS: Stakeholders prefer models of care that: are nationally centralised or a hybrid of national and local care, involve professionals collaborating to deliver care, have clear roles and responsibilities outlined (including administrative, coordinator, clinical and charity roles), provide access to records and offer flexible appointments (in terms of timing and mode). Many factors influenced coordination, including those relating to the patient (e.g., condition complexity, patient's location and ability to coordinate their own care), the healthcare professional (e.g., knowledge and time), the healthcare environment (e.g., resources) and societal factors (e.g., availability of funding). We developed and refined ten illustrative hypothetical models of care coordination for rare conditions. CONCLUSION: Findings underline that different models of care coordination may be appropriate in different situations. It is possible to develop models of care coordination which are tailored to the individual in context. Findings may be used to facilitate planning around which models of care coordination may be appropriate in different services or circumstances. Findings may also be used by key stakeholders (e.g. patient organisations, clinicians and service planners) as a decision-making tool

Development of models of care coordination for rare conditions: a qualitative study.

INTRODUCTION: Improving care coordination for people with rare conditions may help to reduce burden on patients and carers and improve the care that patients receive. We recently developed a taxonomy of different ways of coordinating care for rare conditions. It is not yet known which models of care coordination are appropriate in different situations. This study aimed to: (1) explore what types of care coordination may be appropriate in different situations, and (2) use these findings to develop hypothetical models of care coordination for rare conditions. METHODS: To explore appropriateness of different types of care coordination, we conducted interviews (n = 30), four focus groups (n = 22) and two workshops (n = 27) with patients, carers, healthcare professionals, commissioners, and charity representatives. Participants were asked about preferences, benefits and challenges, and the factors influencing coordination. Thematic analysis was used to develop hypothetical models of care coordination. Models were refined following feedback from workshop participants. RESULTS: Stakeholders prefer models of care that: are nationally centralised or a hybrid of national and local care, involve professionals collaborating to deliver care, have clear roles and responsibilities outlined (including administrative, coordinator, clinical and charity roles), provide access to records and offer flexible appointments (in terms of timing and mode). Many factors influenced coordination, including those relating to the patient (e.g., condition complexity, patient's location and ability to coordinate their own care), the healthcare professional (e.g., knowledge and time), the healthcare environment (e.g., resources) and societal factors (e.g., availability of funding). We developed and refined ten illustrative hypothetical models of care coordination for rare conditions. CONCLUSION: Findings underline that different models of care coordination may be appropriate in different situations. It is possible to develop models of care coordination which are tailored to the individual in context. Findings may be used to facilitate planning around which models of care coordination may be appropriate in different services or circumstances. Findings may also be used by key stakeholders (e.g. patient organisations, clinicians and service planners) as a decision-making tool