Living with Parkinson's in England during and beyond COVID-19 restrictions: a longitudinal qualitative study.

OBJECTIVES: Government-enforced lockdown restrictions associated with preventing the spread of the COVID-19 virus had a series of unintended, negative effects. One group of individuals whose physical and mental health was significantly and disproportionately impacted were those with Parkinson's. However, research has been mainly cross-sectional, with no previous study qualitatively following up participants through both lockdowns and the easing of restrictions. Consequently, this study aimed to provide a detailed understanding of the experience of lockdowns and the easing of restrictions on the physical and mental health of people with Parkinson's. METHOD: Data from semi-structured interviews collected at four time points across an 18-month period (May 2020 - September 2021) from the same participants (six men and four women) were analysed using interpretative phenomenological analysis. RESULTS: Three themes were derived: (1) Wrestling with a Parkinson's identity, agency and control during the pandemic; (2) The encroachment and acceleration of a Parkinson's future; and (3) Recalibrating priorities from COVID-19 to Parkinson's. CONCLUSION: As currently the only published study to provide an in-depth longitudinal analysis with this population, we used a more dynamic theoretical account, Strauss and Corbin's theory of illness trajectories, to understand the findings and suggest ways of supporting individuals with Parkinson's in this stage of the pandemic. The scale and breadth of the support needed is a significant challenge for current statutory systems.

The joint impact of symptom deterioration and social factors on wellbeing for people with Parkinson's during the covid-19 pandemic in the UK.

The covid-19 pandemic and associated restrictions have had significant consequences for those living with chronic conditions such as Parkinson's. The restrictions in access to healthcare as well as reductions in social care, family support and community activities have led to decreases in physical and mental wellbeing. However, not everyone has been equally affected and the predictors of distress are currently being investigated worldwide. Here we use data from a UK survey conducted by the charity Parkinson's UK during Summer 2021 to look at physical and social predictors of wellbeing of people with Parkinson's. Specifically, we aimed to look at the combined effects of worsening physical symptoms, social isolation and loneliness on psychological wellbeing when controlling for age, gender and disease duration. The data from 612 participants were analysed using multiple regression analyses and showed that worsened physical symptoms, loneliness and social isolation each independently predicted wellbeing thus showing the impact of both physical symptoms and social factors. Improved access to healthcare and physical activity is needed to help improve physical health. However, addressing the social needs of people with Parkinson's is also important, and not only during a pandemic. Additional interventions may be needed to reduce social isolation and loneliness as there may be added barriers for people with Parkinson's which need to be considered.

Successful Healthcare Improvements From Translating Evidence in complex systems (SHIFT-Evidence): simple rules to guide practice and research.

BACKGROUND: Evidence translation and improvement research indicate that healthcare contexts are complex systems, characterized by uncertainty and surprise, which often defy orchestrated intervention attempts. This article reflects on the implications of complexity on attempts to translate evidence, and on a newly published framework for Successful Healthcare Improvements From Translating Evidence in complex systems (SHIFT-Evidence). DISCUSSION: SHIFT-Evidence positions the challenge of evidence translation within the complex and evolving context of healthcare, and recognizes the wider issues practitioners routinely face. It is empirically grounded, and designed to be comprehensive, practically relevant and actionable. SHIFT-evidence is summarized by three principles designed to be intuitive and memorable: 'act scientifically and pragmatically'; 'embrace complexity'; and 'engage and empower'. Common challenges and strategies to overcome them are summarized in 12 'simple rules' that provide actionable guidance. CONCLUSION: SHIFT-Evidence provides a practical tool to guide practice and research of evidence translation and improvement within complex dynamic healthcare settings. Implications are that improvement initiatives and research study designs need to take into account the unique initial conditions in each local setting; conduct needs to respond to unpredictable effects and address dependent problems; and evaluation needs to be sensitive to evolving priorities and the emergent range of activities required to achieve improvement.

Simple rules for evidence translation in complex systems: A qualitative study.

BACKGROUND: Ensuring patients benefit from the latest medical and technical advances remains a major challenge, with rational-linear and reductionist approaches to translating evidence into practice proving inefficient and ineffective. Complexity thinking, which emphasises interconnectedness and unpredictability, offers insights to inform evidence translation theories and strategies. Drawing on detailed insights into complex micro-systems, this research aimed to advance empirical and theoretical understanding of the reality of making and sustaining improvements in complex healthcare systems. METHODS: Using analytical auto-ethnography, including documentary analysis and literature review, we assimilated learning from 5 years of observation of 22 evidence translation projects (UK). We used a grounded theory approach to develop substantive theory and a conceptual framework. Results were interpreted using complexity theory and 'simple rules' were identified reflecting the practical strategies that enhanced project progress. RESULTS: The framework for Successful Healthcare Improvement From Translating Evidence in complex systems (SHIFT-Evidence) positions the challenge of evidence translation within the dynamic context of the health system. SHIFT-Evidence is summarised by three strategic principles, namely (1) 'act scientifically and pragmatically' - knowledge of existing evidence needs to be combined with knowledge of the unique initial conditions of a system, and interventions need to adapt as the complex system responds and learning emerges about unpredictable effects; (2) 'embrace complexity' - evidence-based interventions only work if related practices and processes of care within the complex system are functional, and evidence-translation efforts need to identify and address any problems with usual care, recognising that this typically includes a range of interdependent parts of the system; and (3) 'engage and empower' - evidence translation and system navigation requires commitment and insights from staff and patients with experience of the local system, and changes need to align with their motivations and concerns. Twelve associated 'simple rules' are presented to provide actionable guidance to support evidence translation and improvement in complex systems. CONCLUSION: By recognising how agency, interconnectedness and unpredictability influences evidence translation in complex systems, SHIFT-Evidence provides a tool to guide practice and research. The 'simple rules' have potential to provide a common platform for academics, practitioners, patients and policymakers to collaborate when intervening to achieve improvements in healthcare.

What makes a sustainability tool valuable, practical and useful in real-world healthcare practice? A mixed-methods study on the development of the Long Term Success Tool in Northwest London.

OBJECTIVES: Although improvement initiatives show benefits to patient care, they often fail to sustain. Models and frameworks exist to address this challenge, but issues with design, clarity and usability have been barriers to use in healthcare settings. This work aimed to collaborate with stakeholders to develop a sustainability tool relevant to people in healthcare settings and practical for use in improvement initiatives. DESIGN: Tool development was conducted in six stages. A scoping literature review, group discussions and a stakeholder engagement event explored literature findings and their resonance with stakeholders in healthcare settings. Interviews, small-scale trialling and piloting explored the design and tested the practicality of the tool in improvement initiatives. SETTING: National Institute for Health Research Collaboration for Leadership in Applied Health Research and Care for Northwest London (CLAHRC NWL). PARTICIPANTS: CLAHRC NWL improvement initiative teams and staff. RESULTS: The iterative design process and engagement of stakeholders informed the articulation of the sustainability factors identified from the literature and guided tool design for practical application. Key iterations of factors and tool design are discussed. From the development process, the Long Term Success Tool (LTST) has been designed. The Tool supports those implementing improvements to reflect on 12 sustainability factors to identify risks to increase chances of achieving sustainability over time. The Tool is designed to provide a platform for improvement teams to share their own views on sustainability as well as learn about the different views held within their team to prompt discussion and actions. CONCLUSION: The development of the LTST has reinforced the importance of working with stakeholders to design strategies which respond to their needs and preferences and can practically be implemented in real-world settings. Further research is required to study the use and effectiveness of the tool in practice and assess engagement with the method over time.

Patient and public involvement: how much do we spend and what are the benefits?

BACKGROUND AND OBJECTIVES: Patient and public involvement (PPI) is seen as a way of helping to shape health policy and ensure a patient-focused health-care system. While evidence indicates that PPI can improve health-care decision making, it also consumes monetary and non-monetary resources. Given the financial climate, it is important to start thinking about the costs and benefits of PPI and how to evaluate it in economic terms. DESIGN: We conducted a literature review to assess the potential benefits and costs of involvement and the challenges in carrying out an economic evaluation of PPI. RESULTS: The benefits of PPI include effects on the design of new projects or services, on NHS governance, on research design and implementation and on citizenship and equity. Economic evaluation of PPI activities is limited. The lack of an appropriate analytical framework, data recording and understanding of the potential costs and benefits of PPI, especially from participants' perspectives, represent serious constraints on the full evaluation of PPI. CONCLUSIONS: By recognizing the value of PPI, health-care providers and commissioners can embed it more effectively within their organizations. Better knowledge of costs may prompt organizations to effectively plan, execute, evaluate and target resources. This should increase the likelihood of more meaningful activity, avoid tokenism and enhance organizational efficiency and reputation.

Monitoring patient flow in emergency departments: the use of scatterplots versus time-based measures to assess patient flow in A&E.

OBJECTIVES: Care providers need accurate information to help them effectively manage patient flow in emergency departments (EDs) and deliver high-quality care within time constraints. Data should alert care providers to clinical risk and poor patient experience. In England, NHS A&E guidance proposes, among others, three measures to understand the distribution of waiting times in EDs - the median wait, 95th percentile and maximum wait. This study explores how well these three measures monitor performance and the potential added value of scatterplots. PATIENTS AND METHODS: Anonymized patient-level data on 463 000 patient visits collected over 2 full years recording length of stay to the nearest minute from four separate EDs were analysed. Scatterplots providing a detailed representation of the distribution of waiting times were produced for all sites. For each hospital, we explored how informative the scatterplots were compared with the single measures required under the NHS Outcomes Framework. RESULTS: There are several instances where the use of scatterplots adds value by identifying concerns that are not detected by the use of single measures alone. CONCLUSION: The use of scatterplots could help care providers better understand the distribution of waiting times in EDs, identify where EDs struggle to deliver care against time constraints and highlight poor patient experience and prompt action to address concerns.

Making change last: applying the NHS institute for innovation and improvement sustainability model to healthcare improvement.

The implementation of evidence-based treatments to deliver high-quality care is essential to meet the healthcare demands of aging populations. However, the sustainable application of recommended practice is difficult to achieve and variable outcomes well recognised. The NHS Institute for Innovation and Improvement Sustainability Model (SM) was designed to help healthcare teams recognise determinants of sustainability and take action to embed new practice in routine care. This article describes a formative evaluation of the application of the SM by the National Institute for Health Research Collaboration for Leadership in Applied Health Research and Care for Northwest London (CLAHRC NWL). Data from project teams' responses to the SM and formal reviews was used to assess acceptability of the SM and the extent to which it prompted teams to take action. Projects were classified as 'engaged,' 'partially engaged' and 'non-engaged.' Quarterly survey feedback data was used to explore reasons for variation in engagement. Score patterns were compared against formal review data and a 'diversity of opinion' measure was derived to assess response variance over time. Of the 19 teams, six were categorized as 'engaged,' six 'partially engaged,' and seven as 'non-engaged.' Twelve teams found the model acceptable to some extent. Diversity of opinion reduced over time. A minority of teams used the SM consistently to take action to promote sustainability but for the majority SM use was sporadic. Feedback from some team members indicates difficulty in understanding and applying the model and negative views regarding its usefulness. The SM is an important attempt to enable teams to systematically consider determinants of sustainability, provide timely data to assess progress, and prompt action to create conditions for sustained practice. Tools such as these need to be tested in healthcare settings to assess strengths and weaknesses and findings disseminated to aid development. This study indicates the SM provides a potentially useful approach to measuring teams' views on the likelihood of sustainability and prompting action. Securing engagement of teams with the SM was challenging and redesign of elements may need to be considered. Capacity building and facilitation appears necessary for teams to effectively deploy the SM.

A systematic review of evidence on the links between patient experience and clinical safety and effectiveness.

OBJECTIVE: To explore evidence on the links between patient experience and clinical safety and effectiveness outcomes. DESIGN: Systematic review. SETTING: A wide range of settings within primary and secondary care including hospitals and primary care centres. PARTICIPANTS: A wide range of demographic groups and age groups. PRIMARY AND SECONDARY OUTCOME MEASURES: A broad range of patient safety and clinical effectiveness outcomes including mortality, physical symptoms, length of stay and adherence to treatment. RESULTS: This study, summarising evidence from 55 studies, indicates consistent positive associations between patient experience, patient safety and clinical effectiveness for a wide range of disease areas, settings, outcome measures and study designs. It demonstrates positive associations between patient experience and self-rated and objectively measured health outcomes; adherence to recommended clinical practice and medication; preventive care (such as health-promoting behaviour, use of screening services and immunisation); and resource use (such as hospitalisation, length of stay and primary-care visits). There is some evidence of positive associations between patient experience and measures of the technical quality of care and adverse events. Overall, it was more common to find positive associations between patient experience and patient safety and clinical effectiveness than no associations. CONCLUSIONS: The data presented display that patient experience is positively associated with clinical effectiveness and patient safety, and support the case for the inclusion of patient experience as one of the central pillars of quality in healthcare. It supports the argument that the three dimensions of quality should be looked at as a group and not in isolation. Clinicians should resist sidelining patient experience as too subjective or mood-oriented, divorced from the 'real' clinical work of measuring safety and effectiveness.

Challenges in evaluating telehealth through RCT-the problem of randomization.

Telehealth is heralded as a panacea to control burgeoning demand on healthcare resources and lack of streamlining in care delivery. However, evaluating the effectiveness of telehealth on health and care delivery outcomes through randomized controlled trials (RCTs) has been an issue of contention. This research investigates the issues that affect telehealth evaluation. The strategy adopted in this research involved conducting a qualitative longitudinal case study, in the UK. Data was collected through focus group discussions and interviews; and analyzed thematically. The results of this research indicate that there are both practical and methodological issues that affect evaluation of telehealth through RCT in healthcare. Addressing these issues is vital in order to understand how an evaluation strategy should be deployed, and whether it is suited to the healthcare context.

Understanding what matters to patients - identifying key patients' perceptions of quality.

OBJECTIVES: To demonstrate a statistical method to enable the identification of key drivers of quality from a patient perspective that can be used by service providers to help drive improvement. DESIGN: Cross-tabulation, Chi-square analysis and Cramer's V calculation using SPSS software of NHS Inpatient Surveys 2006 and 2007. SETTING: The NHS Inpatient Survey is a standardized survey designed by the Picker Institute conducted on a sample of patients across all acute care hospital trusts in England. PARTICIPANTS: The surveys (available from the UK Data Archive) provide anonymized patient data for over 77,000 patients in 2006 and 72,000 patients in 2007. MAIN OUTCOME MEASURES: Cramer's V score testing associations between patient ratings on multiple components of care and ratings on the overall quality of care. RESULTS: Of the 58 questions analysed, some questions correlate more strongly with overall satisfaction of care than others and there is strong agreement of results over the two years. Of the top 20 rated components, communication (both between professionals and between professionals and patients) and trust engendered by that communication is a recurring theme. CONCLUSIONS: Hospital trusts are required to develop quality indicators and collate detailed feedback from patients in addition to the annual inpatient survey to measure these. To make best use of resources, additional data collection should focus on those aspects of care of most importance to patients locally. This analysis demonstrates a statistical technique that can help to identify such priority areas by showing those aspects of care most strongly associated with the overall rating of care. The analysis uses national level data to demonstrate how this can be achieved. This shows the importance to patients of being treated with dignity and respect, and good communication between staff and between staff and patients.

Civil society organisations and global health initiatives: problems of legitimacy.

Civil society organisations (CSOs) have a prominent role in global health initiatives such as The Global Fund to Fight AIDS, Tuberculosis and Malaria (the Global Fund) and, in the United States, the President's Emergency Plan for AIDS Relief (PEPFAR). They are increasingly consulted by international organisations and, in some cases like the Global Fund, are involved in decision-making. They are also increasingly seen as crucial agents in delivering health interventions on the ground. Some donors prefer to channel funds through CSOs in developing countries than through perceived to be corrupt or inefficient government agencies. This paper examines this growing role and the arguments put forward to justify their increasing influence, particularly in HIV/AIDS initiatives. It analyses the main challenges to CSOs' legitimacy and outlines key responses to these challenges. It concludes by suggesting a number of research priorities that might help to evaluate the impact of CSOs in global health initiatives.