A knowledge translation project on community-centred approaches in public health

This paper examines the development and impact of a national knowledge translation project aimed at improving access to evidence and learning on community-centred approaches for health and wellbeing. Structural changes in the English health system meant that knowledge on community engagement was becoming lost and a fragmented evidence base was seen to impact negatively on policy and practice. A partnership started between Public Health England, NHS England and Leeds Beckett University in 2014 to address these issues. Following a literature review and stakeholder consultation, evidence was published in a national guide to community-centred approaches. This was followed by a programme of work to translate the evidence into national strategy and local practice. The paper outlines the key features of the knowledge translation framework developed. Results include positive impacts on local practice and national policy, for example adoption within National Institute for Health and Care Evidence (NICE) guidance and Local Authority public health plans and utilisation as a tool for local audit of practice and commissioning. The framework was successful in its non-linear approach to knowledge translation across a range of inter-connected activity, built on national leadership, knowledge brokerage, coalition building and a strong collaboration between research institute and government agency

Creating and facilitating change for Person-Centred Coordinated Care (P3C): The development of the Organisational Change Tool (P3C-OCT)

BACKGROUND: Person Centred Coordinated Care (P3C) is a UK priority for patients, carers, professionals, commissioners and policy makers. Services are developing a range of approaches to deliver this care with a lack of tools to guide implementation. METHODOLOGY: A scoping review and critical examination of current policy, key literature and NHS guidelines, together with stakeholder involvement led to the identification of domains, subdomains and component activities (processes and behaviours) required to deliver P3C. These were validated through codesign with stakeholders via a series of workshops and cognitive interviews. RESULTS: Six core domains of P3C were identified as follows: (i) my goals, (ii) care planning, (iii) transitions, (iv) decision making (v), information and communication and (vi) organizational support activities. These were populated by 29 core subdomains (question items). A number of response codes (components) to each question provide examples of the processes and activities that can be actioned to achieve each core subdomain of P3C. CONCLUSION: The P3C-OCT provides a coherent approach to monitoring progress and supporting practice development towards P3C. It can be used to generate a shared understanding of the core domains of P3C at a service delivery level, and support reorganization of care for those with complex needs. The tool can reliably detect change over time, as demonstrated in a sample of 40 UK general practices. It is currently being used in four UK evaluations of new models of care and being further developed as a training tool for the delivery of P3C.BACKGROUND: Person Centred Coordinated Care (P3C) is a UK priority for patients, carers, professionals, commissioners and policy makers. Services are developing a range of approaches to deliver this care with a lack of tools to guide implementation. METHODOLOGY: A scoping review and critical examination of current policy, key literature and NHS guidelines, together with stakeholder involvement led to the identification of domains, subdomains and component activities (processes and behaviours) required to deliver P3C. These were validated through codesign with stakeholders via a series of workshops and cognitive interviews. RESULTS: Six core domains of P3C were identified as follows: (i) my goals, (ii) care planning, (iii) transitions, (iv) decision making (v), information and communication and (vi) organizational support activities. These were populated by 29 core subdomains (question items). A number of response codes (components) to each question provide examples of the processes and activities that can be actioned to achieve each core subdomain of P3C. CONCLUSION: The P3C-OCT provides a coherent approach to monitoring progress and supporting practice development towards P3C. It can be used to generate a shared understanding of the core domains of P3C at a service delivery level, and support reorganization of care for those with complex needs. The tool can reliably detect change over time, as demonstrated in a sample of 40 UK general practices. It is currently being used in four UK evaluations of new models of care and being further developed as a training tool for the delivery of P3C

ReseArch with Patient and Public invOlvement: a RealisT evaluation - the RAPPORT study

Background Patient and public involvement (PPI) is a prerequisite for many funding bodies and NHS research ethics approval. PPI in research is defined as research carried out with or by the public rather than to, about or for them. While the benefits of PPI have been widely discussed, there is a lack of evidence on the impact and outcomes of PPI in research. Objectives To determine the types of PPI in funded research, describe key processes, analyse the contextual and temporal dynamics of PPI and explore the experience of PPI in research for all those involved. Mechanisms contributing to the routine incorporation of PPI in the research process were assessed, the impact of PPI on research processes and outcomes evaluated, and barriers and enablers to effective PPI identified. Design A three-staged realist evaluation drawing on Normalisation Process Theory to understand how far PPI was embedded within health-care research in six areas: diabetes mellitus, arthritis, cystic fibrosis, dementia, public health and learning disabilities. The first two stages comprised a scoping exercise and online survey to chief investigators to assess current PPI activity. The third stage consisted of case studies tracked over 18 months through interviews and document analysis. The research was conducted in four regions of England. Participants Non-commercial studies currently running or completed within the previous 2 years eligible for adoption on the UK Clinical Research Network portfolio. A total of 129 case study participants included researchers and PPI representatives from 22 research studies, and representatives from funding bodies and PPI networks

Validation of the person-centred coordinated care experience questionnaire (P3CEQ)

Abstract Background Measuring patient experiences of healthcare is increasingly emphasized as a mechanism to measure, benchmark and drive quality improvement, clinical effectiveness and patient safety at both national and local NHS level. Person-centred coordinated care (P3C) is the conjunction of two constructs; person-centred care and care coordination. It is a complex intervention requiring support for changes to organizational structure and the behaviour of professionals and patients. P3C can be defined as: ‘care and support that is guided by and organized effectively around the needs and preferences of individuals’. Despite the vast array of PRMS available, remarkably few tools have been designed that efficiently probe the core domains of P3C. This paper presents the psychometric properties of a newly developed PREM to evaluate P3C from a patient perspective. Methods A customized EMIS search was conducted at 72 GP practices across the South West (Somerset, Devon and Cornwall) to identify 100 patients with 1 or more LTCs, and are frequent users of primary healthcare services. Partial Credit Rasch Modelling was conducted to identify dimensionality and internal consistency. Ecological validity and sensitivity to change were assessed as part of intervention designed to improve P3C in adults with multiple long-term conditions; comparisons were drawn between the P3CEQ and qualitative data. Results Response rate for the P3CEQ was 32.82%. A two-factor model was identified. Rasch analysis confirmed unidimensionality of each factor (using infit MSQ values between 0.5 and 1.5). High internal consistency was established for both factors; For the Person-centred scale Cronbach’s Alpha = 0.829, Person separation = 0.756 and for the coordination scale Cronbach’s alpha = 0.783, person separation = 0.672. Conclusions The P3CEQ is a valid and reliable measure of P3C. The P3C is considered to have strong face, construct and ecological validity, with demonstrable sensitivity to change in a primary healthcare intervention.Abstract Background Measuring patient experiences of healthcare is increasingly emphasized as a mechanism to measure, benchmark and drive quality improvement, clinical effectiveness and patient safety at both national and local NHS level. Person-centred coordinated care (P3C) is the conjunction of two constructs; person-centred care and care coordination. It is a complex intervention requiring support for changes to organizational structure and the behaviour of professionals and patients. P3C can be defined as: ‘care and support that is guided by and organized effectively around the needs and preferences of individuals’. Despite the vast array of PRMS available, remarkably few tools have been designed that efficiently probe the core domains of P3C. This paper presents the psychometric properties of a newly developed PREM to evaluate P3C from a patient perspective. Methods A customized EMIS search was conducted at 72 GP practices across the South West (Somerset, Devon and Cornwall) to identify 100 patients with 1 or more LTCs, and are frequent users of primary healthcare services. Partial Credit Rasch Modelling was conducted to identify dimensionality and internal consistency. Ecological validity and sensitivity to change were assessed as part of intervention designed to improve P3C in adults with multiple long-term conditions; comparisons were drawn between the P3CEQ and qualitative data. Results Response rate for the P3CEQ was 32.82%. A two-factor model was identified. Rasch analysis confirmed unidimensionality of each factor (using infit MSQ values between 0.5 and 1.5). High internal consistency was established for both factors; For the Person-centred scale Cronbach’s Alpha = 0.829, Person separation = 0.756 and for the coordination scale Cronbach’s alpha = 0.783, person separation = 0.672. Conclusions The P3CEQ is a valid and reliable measure of P3C. The P3C is considered to have strong face, construct and ecological validity, with demonstrable sensitivity to change in a primary healthcare intervention

Codesigning a Measure of Person-Centred Coordinated Care to Capture the Experience of the Patient: The Development of the P3CEQ

Background: Person-centred coordinated care (P3C) is a priority for stakeholders (ie, patients, carers, professionals, policy makers). As a part of the development of an evaluation framework for P3C, we set out to identify patient-reported experience measures (PREMs) suitable for routine measurement and feedback during the development of services. Methods: A rapid review of the literature was undertaken to identity existing PREMs suitable for the probing person-centred and/or coordinated care. Of 74 measures identified, 7 met our inclusion criteria. We critically examined these against core domains and subdomains of P3C. Measures were then presented to stakeholders in codesign workshops to explore acceptability, utility, and their strengths/weaknesses. Results: The Long-Term Condition 6 questionnaire was preferred for its short length, utility, and tone. However, it lacked key questions in each core domain, and in response to requests from our codesign group, new questions were added to cover consideration as a whole person, coordination, care plans, carer involvement, and a single coordinator. Cognitive interviews, on-going codesign, and mapping to core P3C domains resulted in the refinement of the questionnaire to 11 items with 1 trigger question. The 11-item modified version was renamed the P3C Experiences Questionnaire. Conclusions: Due to a dearth of brief measures available to capture people’s experience of P3C for routine practice, an existing measure was modified using an iterative process of adaption and validation through codesign workshops. Next steps include psychometric validation and modification for people with dementia and learning difficulties.</p

The contribution of musculoskeletal disorders in multimorbidity: Implications for practice and policy

People frequently live for many years with multiple chronic conditions (multimorbidity) that impair health outcomes and are expensive to manage. Multimorbidity has been shown to reduce quality of life and increase mortality. People with multimorbidity also rely more heavily on health and care services and have poorer work outcomes. Musculoskeletal disorders (MSDs) are ubiquitous in multimorbidity because of their high prevalence, shared risk factors, and shared pathogenic processes amongst other long-term conditions. Additionally, these conditions significantly contribute to the total impact of multimorbidity, having been shown to reduce quality of life, increase work disability, and increase treatment burden and healthcare costs. For people living with multimorbidity, MSDs could impair the ability to cope and maintain health and independence, leading to precipitous physical and social decline. Recognition, by health professionals, policymakers, non-profit organisations, and research funders, of the impact of musculoskeletal health in multimorbidity is essential when planning support for people living with multimorbidity

Involving Local Fishing Communities in Policy Making: Addressing Illegal Fishing in Indonesia

Illegal, Unreported and Unregulated (IUU) fishing has been identified by the UN as one of the seven major threats to global maritime security; it causes loss of economic revenue, severe environmental damage, and far-reaching livelihood implications for coastal communities. Indonesia, by far the biggest archipelagic state, faces enormous challenges in all aspects of IUU fishing and addressing those is one of the current Indonesian Government’s top priorities. This article addresses the under-researched dimension of how IUU fishing affects fishing communities. With the use of collage making focus groups with fishermen from different Indonesian fishing communities, the research highlights the interrelated environmental (depletion of resources), socio-economic (unbridled illegal activities at sea), cultural (favouritism) and political (weak marine governance) dimensions of IUU fishing as experienced at the local level. However, the research also indicates a strong will by fishermen to be seen as knowledge agents who can help solve the problem by better dissemination of information and cooperation between the local government(s) and the fishing communities. The article concludes by arguing for the involvement of local fishing communities in national and international policy making that addresses IUU fishing

Patient and service user engagement in research: a systematic review and synthesized framework

BackgroundThere is growing attention towards increasing patient and service user engagement (PSUE) in biomedical and health services research. Existing variations in language and design inhibit reporting and indexing, which are crucial to comparative effectiveness in determining best practices.ObjectiveThis paper utilizes a systematic review and environmental scan to derive an evidence‐based framework for PSUE.DesignA metanarrative systematic review and environmental scan/manual search using scientific databases and other search engines, along with feedback from a patient advisory group (PAG).Eligible sourcesEnglish‐language studies, commentaries, grey literature and other sources (including systematic and non‐systematic reviews) pertaining to patient and public involvement in biomedical and health services research.Data extractedStudy description (e.g. participant demographics, research setting) and design, if applicable; frameworks, conceptualizations or planning schemes for PSUE‐related endeavours; and methods for PSUE initiation and gathering patients'/service users' input or contributions.ResultsOverall, 202 sources were included and met eligibility criteria; 41 of these presented some framework or conceptualization of PSUE. Sources were synthesized into a two‐part framework for PSUE: (i) integral PSUE components include patient and service user initiation, reciprocal relationships, colearning and re‐assessment and feedback, (ii) sources describe PSUE at several research stages, within three larger phases: preparatory, execution and translational.Discussion and ConclusionsEfforts at developing a solid evidence base on PSUE are limited by the non‐standard and non‐empirical nature of much of the literature. Our proposed two‐part framework provides a standard structure and language for reporting and indexing to support comparative effectiveness and optimize PSUE.Peer Reviewedhttp://deepblue.lib.umich.edu/bitstream/2027.42/113737/1/hex12090.pd

Gender and recovery pathways in the UK

Recovery is now the defining feature of UK drug and alcohol policy. Despite this policy emphasis, little attention has been paid to the lived experience of those in recovery. Instead, research has typically concentrated on treatment populations, which are predominantly male. Consequently, we have little insight into recovery experiences in general, and specifically how they might differ for females and males. This article makes an important contribution through offering a unique insight into the addiction/recovery pathways of 342 female and 410 male participants using data gathered via the UK Life in Recovery survey. Participants were recruited via social media and recovery groups. Bivariate analyses were used to explore gender differences in relation to personal characteristics, addiction and recovery (self-defined), well-being, and family life. These data suggest that a greater proportion of females in recovery report having specific needs in relation to mental health and relationships with children or partners whilst a greater proportion of males disclosed having specific needs in relation to physical health. Whilst the findings reflect the importance of ongoing support for everyone in recovery, they also suggest the need to provide gender-responsive recovery support