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Aim: To explore what characterises communication and collaboration within a patient and professional partnership in outpatient care settings garnered from the experiences of persons living with long-term conditions., Design: A qualitative descriptive study design., Methods: Semi-structured individual interviews were conducted with 15 persons with long-term condition/s who experienced outpatient treatment or follow-up care. Data were explored through inductive thematic analysis. The COREQ checklist was followed., Results: The analysis revealed five themes: adapting and self-managing in daily life, handling and carrying information, building trust and continuity, acting in a flexible and transparent dialogue and sharing the way forward. The participants described their personal and informal resources, and their actions to take control and manage health and well-being. A person-centred approach, sharing of knowledge and communication skills enabled the development of trust in the healthcare providers and their treatment and care. Communication was facilitated through availability, shared documentation, continuity and coordination of care. Collaboration was described as a flexible dialogue with mutual trust and transparency, shared learning and problem-solving. Sharing the way forward was a process, alongside and important to the life-changing process to cope with the illness., Conclusions: Prerequisites for the collaboration in outpatient settings were availability, continuity and a healthcare system that acknowledged, empowered and adapted to patients' health status, resources, everyday life and a patient's coping processes to manage their disease. For a co-created, person-centred outpatient care, it is important to acknowledge and/or collaborate with the patient's team of other healthcare providers and informal caregivers., Relevance to Clinical Practice: The study contributes to better understanding of patient preferences and prerequisites how to work in partnership and how to develop future services and person-centred care for persons living with long-term conditions., Patient and Public Contribution: Patients included in this study were participants during the data collection process., (© 2024 The Author(s). Nursing Open published by John Wiley & Sons Ltd.)

Background: Countries are adapting their health and social care systems to better meet the needs of growing populations with (multiple) chronic conditions. To guide this process, assessment of the 'patient experience' is becoming increasingly important. For this purpose, the Person-Centred Coordinated Care Experience Questionnaire (P3CEQ) was developed in the United Kingdom, and translated into several languages., Aim: This study aimed to assess the internal and construct validity of the Dutch P3CEQ to capture the experience of person-centred coordinated care of people with chronic conditions in the Netherlands., Participants and Methods: Adults with chronic conditions (N = 1098) completed the Dutch P3CEQ, measures of health literacy and patient activation, and reported the use and perceived quality of care services. Data analysis included Principal Component and reliability analysis (internal validity), analysis of variance and Student's T-tests (construct validity)., Results: The two-component structure found was pretty much the same as in the UK validation study. Sociodemographic correlates also resembled those found in the United Kingdom. Women, persons who were less educated, less health-literate or less activated experienced less person-centred coordinated care. P3CEQ scores correlated positively with general practitioner performance scores and quality ratings of the total care received., Conclusion: The Dutch P3CEQ is a valid instrument to assess the experience of person-centred coordinated care among people with chronic conditions in the Netherlands. Awareness of inequity and more attention to communication skills in professional training are needed to ensure that care professionals better recognize the needs of women, lower educated or less health-literate persons, and improve their experiences of care., Patient Contribution: The P3CEQ has been developed in collaboration with a range of stakeholders. Eighteen persons with (multiple) chronic conditions participated as patient representatives and codesign experts in (four) codesign workshops. Other patient representatives participated in cognitive testing of the English-language instrument. The usability of the P3CEQ to capture the experience of person-centred coordinated care of older persons has been examined by interviewing 228 older European service users, including 13 living in the Netherlands, as part of the SUSTAIN project. More than a thousand persons with chronic conditions participated in the validation study of the Dutch P3CEQ., (© 2022 The Authors. Health Expectations published by John Wiley & Sons Ltd.)

Background: To facilitate change for person-centred care, there is a need to invest in measures to assess if and how healthcare systems are delivering care based on the principles of person-centred care. This paper describes the first phase in developing an item bank to measure patients' experiences of person-centred care., Aim: The aim was to translate, culturally adapt and evaluate candidate items to measure person-centred care from the patient's perspective., Methods: The Centre for person-centred care at Gothenburg university and the UK Person-centred and coordinated care model informed our conceptual framework. The initial pool of item candidates originated from a previous systematic review where 855 items were identified. In this study, a mixed method design was used involving persons with experience as patients, caregivers, healthcare professionals and researchers in person-centred care or questionnaire design (n = 84). The item analysis included two validation rounds using web questionnaires, a focus group and cognitive interviews., Results: From the initial pool, 155 items covering core domains and subdomains of person-centred and coordinated care were selected for translation and qualitative item analysis. After translation, 44 items were excluded (duplicates). After the first validation round, 21 items were rephrased and 35 were excluded (due to low ratings, lack of comprehensibility, were duplicates or too specifically phrased). To reflect the ethical basis of person-centred care, rewordings were also made to encompass the patient as an active partner in care and where communication and information goes two-ways and care is co-created. After the second round, 11 items were rephrased and 25 items were excluded (for being redundant/repetitive). Six new items were added (covering access to care, patient capabilities, mental well-being and identifying goals)., Conclusion: We have developed a first set of 57 items to proceed towards developing an item bank to measure the patient experiences of person-centred care., (© 2021 The Authors. Scandinavian Journal of Caring Sciences published by John Wiley & Sons Ltd on behalf of Nordic College of Caring Science.)

Evidence is emerging of the potential of person-centred approaches to create partnerships between professionals and patients while also containing healthcare costs. This is important for enhancing outcomes in individuals with complex needs, who consistently report poor experiences with care. The shift towards person-centred care (PCC) is, however, a radical departure from the norm, with increased expectations of both professional and patient. Although there have been studies on the ways in which health care professionals can modify practice to enhance PCC, not all patients welcome changes to their care delivery or understand the aim of the new approach. Without engagement and understanding from the patient, a PCC approach will fail to initiate. Few studies explore how, why and in what circumstances patients become more involved in their care and what professionals can do to enhance participation. We conducted a secondary analysis of qualitative data to examine this issue. Data were collected between 2014 and 2018 from primary care-based PCC projects across the southwest of England. Supported by people with experience (practitioners and those receiving treatment), theory building workshops developed an explanatory framework that identified contextual factors and mechanisms likely to contribute to effective engagement. Our results show that engagement in a care partnership is achieved through trust and a patient's sense of candidacy. Shared understanding of purpose, clarity of expectations and power sharing were found to facilitate trusted relationships between professional and patient and encourage candidacy. Only then is it possible to develop goals that are meaningful to the patient. Our theory of engagement applies to professionals and patients alike but places the initial burden of responsibility on those who hold the most power: the professional and the system. This theory has the potential to explain patient engagement in PCC and a range of other service interventions, treatments and intervention research., (© 2021 John Wiley & Sons Ltd.)

The COST CARES project aims to support healthcare cost containment and improve healthcare quality across Europe by developing the research and development necessary for person-centred care (PCC) and health promotion. This paper presents an overview evaluation strategy for testing 'Exploratory Health Laboratories' to deliver these aims. Our strategy is theory driven and evidence based, and developed through a multi-disciplinary and European-wide team. Specifically, we define the key approach and essential criteria necessary to evaluate initial testing, and on-going large-scale implementation with a core set of accompanying methods (metrics, models, and measurements). This paper also outlines the enabling mechanisms that support the development of the "Health Labs" towards innovative models of ethically grounded and evidenced-based PCC.

Background: Revitalized interest in narrative has informed some recent models of patient and person-centred care. Yet, scarce attention has been paid to how narrative elicitation is actually used in person-centred care practice and in which ways it is incorporated into clinical routine., Aim: We aimed to identify facilitators and barriers for narrative elicitation and setting goals in a particular example of person-centred care practice (University of Gothenburg Centre for Person-centred Care, GPCC) where narrative elicitation is considered as a method of setting goals for the patient., Methods: Observation of 14 admission interviews including narrative elicitation on an internal medicine ward in Sweden where person-centred care was implemented. Five focus group vignette-based interviews with nurses (n = 53) were conducted to assess confirmation of the emerging themes., Results: The inductive analysis resulted in three themes about the strategies to elicit patients' narratives: (a) Preparing for narrative elicitation, (b) Lingering in the patient's narrative, and (c) Co-creating, that is, the practitioner's and third parties' engagement in the patient's narration. Even though there were obstacles to eliciting narratives and setting lifeworld goals in a medical setting, narrative elicitation was often useful to turn general and medical goals into more specific and personal goals., Conclusions: Narrative elicitation is neither a simple transition from traditional medical history taking nor a type of structured interview. It entails skills and strategies to be practiced. On the one hand, it revitalizes ethical considerations about clinical relationship building. On the other hand, it can help patients articulate lifeworld goals that are meaningful and important for themselves., (© 2019 The Authors. Health Expectations published by John Wiley & Sons Ltd.)

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., (© The Author(s) 2018. Published by Oxford University Press in association with the International Society for Quality in Health Care.)

Objectives: To evaluate a county-wide deincentivisation of the Quality and Outcomes Framework (QOF) payment scheme for UK General Practice (GP)., Setting: In 2014, National Health Service England signalled a move towards devolution of QOF to Clinical Commissioning Groups. Fifty-five GPs in Somerset established the Somerset Practice Quality Scheme (SPQS)-a deincentivisation of QOF-with the goal of redirecting resources towards Person Centred Coordinated Care (P3C), especially for those with long-term conditions (LTCs). We evaluated the impact on processes and outcomes of care from April 2016 to March 2017., Participants and Design: The evaluation used data from 55 SPQS practices and 17 regional control practices for three survey instruments. We collected patient experiences ('P3C-EQ'; 2363 returns from patients with 1+LTC; 36% response rate), staff experiences ('P3C-practitioner'; 127 professionals) and organisational data ('P3C-OCT'; 36 of 55 practices at two time points, 65% response rate; 17 control practices). Hospital Episode Statistics emergency admission data were analysed for 2014-2017 for ambulatory-sensitive conditions across Somerset using interrupted time series., Results: Patient and practitioner experiences were similar in SPQS versus control practices. However, discretion from QOF incentives resulted in time savings in the majority of practices, and SPQS practice data showed a significant increase in P3C oriented organisational processes, with a moderate effect size (Wilcoxon signed rank test; p=0.01; r=0.42). Analysis of transformation plans and organisational data suggested stronger federation-level agreements and informal networks, increased multidisciplinary working, reallocation of resources for other healthcare professionals and changes to the structure and timings of GP appointments. No disbenefits were detected in admission data., Conclusion: The SPQS scheme leveraged time savings and reduced administrative burden via discretionary removal of QOF incentives, enabling practices to engage actively in a number of schemes aimed at improving care for people with LTCs. We found no differences in the experiences of patients or healthcare professionals between SPQS and control practices., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2019. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Background: To ascertain whether person centred coordinated care (P3C) is being delivered in healthcare services, components relating to the construct need to be measured. Patient reported measures (PRMs) can be used to provide a measurement of patients' experiences of P3C. Traditionally, they have been used to assess whether interventions are delivering P3C. Recently there has been an increased interest in using them to directly enhance P3C in clinical practice by, for example, improving practitioner-patient communication. However, there is limited research available on how P3C can be implemented in practice. This study aimed to extend this literature base by exploring how professionals use PRMs to enhance P3C., Methods: Cross sectional thematic analysis of 26 semi-structured interviews with a variety of professionals who have experience of how PRMs can be used to make improvements to P3C. Inductive themes were mapped onto components of P3C care that fell under five established domains of P3C (Information and Communication; My Goals/Outcomes; Decision making; Care Planning and Transitions) to explore whether and how individual components of P3C were being improved through PRMs. Barriers and facilitators that affected the delivery and the results of the PRMs were also identified., Results: Three P3C domains (Information and Communication, My Goals/Outcomes and Care Planning) were mapped frequently onto themes generated by the participants' interviews about PRM use. However, the domain 'Decision Making' was only mapped onto one theme and 'Transitions' was not mapped at all. Participant reports suggested that PRM use by practitioners enhanced patients' ability to self-manage, communicate, engage and reflect during consultations. Barriers to PRM use were related to a lack of a whole service approach to implementation., Conclusions: Practitioners use both PROMs and PREMs in various ways to improve different aspects of patient care. By sharing experiences professionals can benefit from each other's learning and work together to extend the potential value that PRMs can offer to P3C delivery.

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., (© 2017 The Authors Health Expectations Published by John Wiley & Sons Ltd.)

Background: Person‐centred care is a growing imperative in healthcare, but the documentation of person‐centred care is challenging. According to the Gothenburg Framework of Person‐centred Care, care should be documented in continuously revised care plans and based on patients' personally formulated goals and resources to secure a continuous partnership. Objectives: This study aimed to examine care plans produced within a randomised controlled trial that tested a person‐centred care intervention in older people with acute coronary syndrome. Nurses with training in the theory and practice of person‐centred care had written the care plans. Methods: We conducted a secondary analysis of care plans developed in a randomised controlled trial for assessing person‐centred care in patients with acute coronary syndrome (Myocardial Infarct [MI] or unstable angina pectoris). The study sample included 84 patients, with three care plans for each patient from inpatient (T1), outpatient (T2) and primary care (T3), that is, a total of 252 care plans. We conducted a descriptive quantitative content analysis of the care plans to examine the reported patients' life‐world and medical/health resources and goals. Results: The analysis illustrates the differences and overlaps between life‐world and medical/health goals and resources. The documented goals and resources change over time: life‐world goals and resources decreased with time as medical/health goals and resources documentation increased. Conclusions: This paper illustrates that in the setting of a randomised controlled trial, nurses with training in person‐centred care recorded fewer life‐world and more medical/health goals over time. Placing life‐world goals at the top of the goal hierarchy enables alignment with medical/health goals. Further research should explore whether the goals and resources documented in care plans accurately reflect patients' wishes as they transition along the care chain. Trial registration: Swedish registry, Researchweb.org, ID NR 65 791. [ABSTRACT FROM AUTHOR]

The increasing popularity of the term 'person‐centred' in the healthcare literature and a wide range of ideals and practices it implies point to the need for a more inclusive and holistic healthcare provision. A framework developed in a Swedish context suggested narrative elicitation as a key practice in transition to person‐centred care. Initiating clinical communication by inviting people to tell their stories makes persistent yet often subtle problems in clinical communication visible. By drawing upon an observational study on narrative elicitation and vignette‐based focus group interviews with nurses, our aim is to trace 'credibility deficits' (Fricker 2007. Epistemic Injustice. Power and the Ethics of Knowing. Oxford: Oxford University Press) and 'credibility excesses' (Medina 2011, Social Epistemology, 25, 1, 15–35, 2013, The Epistemology of Resistance: Gender and Racial Oppression, Epistemic Injustice, and the Social Imagination. Oxford: Oxford University Press) in narrative elicitation. We argue that narrative elicitation may be one way to tackle epistemic injustices by giving voice to previously silenced groups, yet it is not enough to erase the effects of 'credibility deficits' in clinical communication. Rather than judging individual professionals' success or failure in eliciting narratives, we underline some extrinsic problems of narrative elicitation, namely structural and positional inequalities reflecting on narrative elicitation and the credibility of patients. 'Credibility excesses' can be useful and indicative to better understand where they are missing. [ABSTRACT FROM AUTHOR]

Background: Fragmented care results in poor outcomes for individuals with complexity of need. Person-centred coordinated care (P3C) is perceived to be a potential solution, but an absence of accessible evidence and the lack of a scalable 'blue print' mean that services are 'experimenting' with new models of care with little guidance and support. This paper presents an approach to the implementation of P3C using collaborative action, providing examples of early developments across this programme of work, the core aim of which is to accelerate the spread and adoption of P3C in United Kingdom primary care settings.Methods: Two centrally funded United Kingdom organisations (South West Collaboration for Leadership in Applied Health Research and Care and South West Academic Health Science Network) are leading this initiative to narrow the gap between research and practice in this urgent area of improvement through a programme of service change, evaluation and research. Multi-stakeholder engagement and co-design are core to the approach. A whole system measurement framework combines outcomes of importance to patients, practitioners and health organisations. Iterative and multi-level feedback helps to shape service change while collecting practice-based data to generate implementation knowledge for the delivery of P3C. The role of the research team is proving vital to support informed change and challenge organisational practice. The bidirectional flow of knowledge and evidence relies on the transitional positioning of researchers and research organisations.Results: Extensive engagement and embedded researchers have led to strong collaborations across the region. Practice is beginning to show signs of change and data flow and exchange is taking place. However, working in this way is not without its challenges; progress has been slow in the development of a linked data set to allow us to assess impact innovations from a cost perspective. Trust is vital, takes time to establish and is dependent on the exchange of services and interactions. If collaborative action can foster P3C it will require sustained commitment from both research and practice. This approach is a radical departure from how policy, research and practice traditionally work, but one that we argue is now necessary to deal with the most complex health and social problems. [ABSTRACT FROM AUTHOR]

Background: Patient-reported measure (PRM) questionnaires were originally used in research to measure outcomes of intervention studies. They have now evolved into a diverse family of tools measuring a range of constructs including quality of life and experiences of care. Current health and social care policy increasingly advocates their use for embedding the patient voice into service redesign through new models of care such as person-centered coordinated care (P3C). If chosen carefully and used efficiently, these tools can help improve care delivery through a variety of novel ways, including system-level feedback for health care management and commissioning. Support and guidance on how to use these tools would be critical to achieve these goals.Objective: The objective of this study was to develop evidence-based guidance and support for the use of P3C-PRMs in health and social care policy through identification of PRMs that can be used to enhance the development of P3C, mapping P3C-PRMs against an existing model of domains of P3C, and integration and organization of the information in a user-friendly Web-based database.Methods: A pragmatic approach was used for the systematic identification of candidate P3C-PRMs, which aimed at balancing comprehensiveness and feasibility. This utilized a number of resources, including existing compendiums, peer-reviewed and gray literature (using a flexible search strategy), and stakeholder engagement (which included guidance for relevant clinical areas). A subset of those candidate measures (meeting prespecified eligibility criteria) was then mapped against a theoretical model of P3C, facilitating classification of the construct being measured and the subsequent generation of shortlists for generic P3C measures, specific aspects of P3C (eg, communication or decision making), and condition-specific measures (eg, diabetes, cancer) in priority areas, as highlighted by stakeholders.Results: In total, 328 P3C-PRMs were identified, which were used to populate a freely available Web-based database. Of these, 63 P3C-PRMs met the eligibility criteria for shortlisting and were classified according to their measurement constructs and mapped against the theoretical P3C model. We identified tools with the best coverage of P3C, thereby providing evidence of their content validity as outcome measures for new models of care. Transitions and medications were 2 areas currently poorly covered by existing measures. All the information is currently available at a user-friendly web-based portal (p3c.org.uk), which includes all relevant information on each measure, such as the constructs targeted and links to relevant literature, in addition to shortlists according to relevant constructs.Conclusions: A detailed compendium of P3C-PRMs has been developed using a pragmatic systematic approach supported by stakeholder engagement. Our user-friendly suite of tools is designed to act as a portal to the world of PRMs for P3C, and have utility for a broad audience, including (but not limited to) health care commissioners, managers, and researchers. [ABSTRACT FROM AUTHOR]