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The Woundcare for Epidermolysis bullosa (WEB) project aims to enable people with Epidermolysis bullosa (EB), their carers and clinicians to co-produce wound care products to meet their needs. EB is an inherited disorder causing extensive,... more
The Woundcare for Epidermolysis bullosa (WEB) project aims to enable people with Epidermolysis bullosa (EB), their carers and clinicians to co-produce wound care products to meet their needs. EB is an inherited disorder causing extensive, painful skin blistering and wounds. It is relatively rare, with approximately 300 000 patients worldwide, but it incurs high costs (up to £50 000 per month on products alone). During the course of four workshops, adults with EB, their carers and specialist nurses gave detailed accounts of their experiences with pre-sized, pre-shaped dressings, including the need to patchwork individual dressings over large areas of broken skin. Five themes were identified from the workshop data relating to the limitations of existing products for EB wounds: dressing fit, stability, comfort, temperature and exudate. Novel designs were generated from these themes and although the intention was to develop the designs iteratively with the workshop participants, issues arose necessitating the interim use of surrogates. Our account of the design process is given, presenting the arguments for and against the use of surrogates, with suggestions for incorporating surrogate input into product development in a way that does not undermine the integrity of patient experiences or the co-production process.
Background: Relatively little is known about how people and groups who function in boundary-spanning positions between different sectors, organisations and professions contribute to improved quality of health care and clinical... more
Background: Relatively little is known about how people and groups who function in boundary-spanning positions between different sectors, organisations and professions contribute to improved quality of health care and clinical outcomes.

Objectives: To explore whether or not boundary-spanning processes stimulate the creation and exchange of knowledge between sectors, organisations and professions and whether or not this leads, through better integration of services, to improvements in the quality of care.

Design: A 2-year longitudinal nested case study design using mixed methods.

Setting: An inner-city area in England (‘Coxford’) comprising 26 general practices in ‘Westpark’ and a comparative sample of 57 practices.

Participants: Health-care and non-health-care practitioners representing the range of staff participating in the Westpark Initiative (WI) and patients.

Interventions: The WI sought to improve services through facilitating knowledge exchange and collaboration between general practitioners, community services, voluntary groups and acute specialists during the period late 2009 to early 2012. We investigated the impact of the four WI boundary-spanning teams on services and the processes through which they produced their effects.

Main outcome measures: (1) Quality-of-care indicators during the period 2008–11; (2) diabetes admissions data from April 2006 to December 2011, adjusted for deprivation scores; and (3) referrals to psychological therapies from January 2010 to March 2012.

Data sources: Data sources included 42 semistructured staff interviews, 361 hours of non-participant observation, 36 online diaries, 103 respondents to a staff survey, two patient focus groups and a secondary analyses of local and national data sets.

Results: The four teams varied in their ability to, first, exchange knowledge across boundaries and, second, implement changes to improve the integration of services. The study setting experienced conditions of flux and uncertainty in which known horizontal and vertical structures underwent considerable change and the WI did not run its course as originally planned. Although knowledge exchanges did occur across sectoral, organisational and professional boundaries, in the case of child and family health services, early efforts to improve the integration of services were not sustained. In the case of dementia, team leadership and membership were undermined by external reorganisations. The anxiety and depression in black and minority ethnic populations team succeeded in reaching its self-defined goal of increasing referrals from Westpark practices to the local well-being service. From October to December 2010 onwards, referrals have been generally higher in the six practices with a link worker than in those without, but the performance of Westpark and Coxford practices did not differ significantly on three national quality indicators. General practices in a WI diabetes ‘cluster’ performed better on three of 17 Quality and Outcomes Framework (QOF) indicators than practices in the remainder of Westpark and in the wider Coxford primary care trust. Surprisingly, practices in Westpark, but not in the diabetes cluster, performed better on one indicator. No statistically significant differences were found on the remaining 13 QOF indicators. The time profiles differed significantly between the three groups for elective and emergency admissions and bed-days.

Conclusions: Boundary spanning is a potential solution to the challenge of integrating health-care services and we explored how such processes perform in an ‘extreme case’ context of uncertainty. Although the WI may have been a necessary intervention to enable knowledge exchange across a range of boundaries, it was not alone sufficient. Even in the face of substantial challenges, one of the four teams was able to adapt and build resilience. Implications for future boundary-spanning interventions are identified. Future research should evaluate the direct, measurable and sustained impact of boundary-spanning processes on patient care outcomes (and experiences), as well as further empirically based critiques and reconceptualisations of the socialisation→externalisation→combination→internalisation (SECI) model, so that the implications can be translated into practical ideas developed in partnership with NHS managers.

Funding: The National Institute for Health Research Health Services and Delivery Research programme.
To explore why innovations in service and delivery are adopted and how they are then successfully implemented and eventually assimilated into routine nursing practice.
There is little strong evidence relating to the impact of single-room accommodation on healthcare quality and safety. We explore the impact of all single rooms on staff and patient experience; safety outcomes; and costs. Mixed methods... more
There is little strong evidence relating to the impact of single-room accommodation on healthcare quality and safety. We explore the impact of all single rooms on staff and patient experience; safety outcomes; and costs. Mixed methods pre/post 'move' comparison within four nested case study wards in a single acute hospital with 100% single rooms; quasi-experimental before-and-after study with two control hospitals; analysis of capital and operational costs associated with single rooms. Two-thirds of patients expressed a preference for single rooms with comfort and control outweighing any disadvantages (sense of isolation) felt by some. Patients appreciated privacy, confidentiality and flexibility for visitors afforded by single rooms. Staff perceived improvements (patient comfort and confidentiality), but single rooms were worse for visibility, surveillance, teamwork, monitoring and keeping patients safe. Staff walking distances increased significantly post move. A temporary...
We trace the legacies of filmed patient narratives that were edited and screened to encourage engagement with a participatory quality improvement project in an acute hospital setting in England. Using Gabriel's theory of... more
We trace the legacies of filmed patient narratives that were edited and screened to encourage engagement with a participatory quality improvement project in an acute hospital setting in England. Using Gabriel's theory of "narrative contract," we examine the initial success of the films in establishing common grounds for participatory project and later, and more varied, interpretations of the films. Over time, the films were interpreted by staff as either useful sources of learning by critical reflection, dubious (invalid or unreliable) representations of patient experience, or as "closed" items available as auditable evidence of completed quality improvement work. We find these interpretations of the films to be shaped by the effect of social distance, the differential outcomes of project work, and changing organizational agendas. We consider the wider conditions of patient narrative as a form of quality improvement knowledge with immediate potency and fragil...
Many families experience difficulty in talking about an inherited genetic condition that affects one or more of them. There have now been a number of studies identifying the issues in detail, however few have developed interventions to... more
Many families experience difficulty in talking about an inherited genetic condition that affects one or more of them. There have now been a number of studies identifying the issues in detail, however few have developed interventions to assist families. The SPRinG collaborative have used the UK Medical Research Council's guidance on Developing and Evaluating Complex Interventions, to work with families and genetic counsellors (GCs) to co-design a psycho-educational intervention to facilitate family communication and promote better coping and adaptation to living with an inherited genetic condition for parents and their children (<18 years). The intervention is modelled on multi-family discussion groups (MFDGs) used in psychiatric settings. The MFDG was developed and tested over three phases. First focus groups with parents, young people, children and health professionals discussed whether MFDG was acceptable and proposed a suitable design. Using evidence and focus group data, the intervention and a training manual were developed and three GCs were trained in its delivery. Finally, a prototype MFDG was led by a family therapist and co-facilitated by the three GCs. Data analysis showed that families attending the focus groups and intervention thought MFDG highly beneficial, and the pilot sessions had a significant impact on their family' functioning. We also demonstrated that it is possible to train GCs to deliver the MFDG intervention. Further studies are now required to test the feasibility of undertaking a definitive randomised controlled trial to evaluate its effectiveness in improving family outcomes before implementing into genetic counselling practice.European Journal of Human Genetics advance online publication, 7 October 2015; doi:10.1038/ejhg.2015.215.
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There is little strong evidence relating to the impact of single-room accommodation on healthcare quality and safety. We explore the impact of all single rooms on staff and patient experience; safety outcomes; and costs. Mixed methods... more
There is little strong evidence relating to the impact of single-room accommodation on healthcare quality and safety. We explore the impact of all single rooms on staff and patient experience; safety outcomes; and costs. Mixed methods pre/post 'move' comparison within four nested case study wards in a single acute hospital with 100% single rooms; quasi-experimental before-and-after study with two control hospitals; analysis of capital and operational costs associated with single rooms. Two-thirds of patients expressed a preference for single rooms with comfort and control outweighing any disadvantages (sense of isolation) felt by some. Patients appreciated privacy, confidentiality and flexibility for visitors afforded by single rooms. Staff perceived improvements (patient comfort and confidentiality), but single rooms were worse for visibility, surveillance, teamwork, monitoring and keeping patients safe. Staff walking distances increased significantly post move. A temporary...
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Background: There is scarce evidence of organization-wide and sustained impact of quality improvement (QI) programs in health care. For 20 years, the Jonkoping County Council’s (Sweden) ambitious program has attracted attention from... more
Background: There is scarce evidence of organization-wide and sustained impact of quality improvement (QI) programs in health care. For 20 years, the Jonkoping County Council’s (Sweden) ambitious program has attracted attention from practitioners and researchers alike. Methods: This is a follow-up case of a 2006 study of Jonkoping’s improvement program, triangulating data from 20 semi-structured interviews, observation and secondary analysis of internal performance data. Results: In 2010, clinical outcomes had clearly improved in 2 departments (pediatrics, intensive care), while process improvements were evident in many departments. In an overall index of the 20 Swedish county councils’ performance, Jonkoping had improved its ranking since 2006 to lead in 2010. Five key issues shaped Jonkoping’s improvement program since 2006: a rigorously managed succession of chief executive officer; adept management of a changing external context; clear strategic direction relating to integration...
Patient narratives have been proposed as an “antidote to interventions, priorities and goals [that] are increasingly dominated by outcomes-driving strategies at the expense of more humanistic approaches to illness care” (Donovan, 2003),... more
Patient narratives have been proposed as an “antidote to interventions, priorities and goals [that] are increasingly dominated by outcomes-driving strategies at the expense of more humanistic approaches to illness care” (Donovan, 2003), with particular value “in situations where clinical or organisational complexity eludes traditional deductive methodologies that rely on reduction by objectification or numerification” (Iedema, 2011). In this presentation we will trace the legacies of filmed patient narratives over a two year period. The films were initially edited and screened as representations of patient experience in order (partly) to encourage clinicians’ engagement with a quality improvement (QI) project in an acute hospital setting in England. In doing so we will examine the ways that – over time – filmed patient narratives acquired and re-acquired meaning as sources of knowledge for clinical and QI staff. Drawing on Gabriel’s theory of the ‘narrative contract’ we will examine...
Experience-based Co-design (EBCD) to improve the quality of healthcare: mapping where we are now and establishing future directions Please cite as: Donetto, S., Tsianakas, V. & Robert, G. (2014). Using Experience-based Co-design to... more
Experience-based Co-design (EBCD) to improve the quality of healthcare: mapping where we are now and establishing future directions Please cite as: Donetto, S., Tsianakas, V. & Robert, G. (2014). Using Experience-based Co-design to improve the quality of healthcare: mapping where we are now and establishing future directions. London: King's College London. Contact Dr Sara Donetto for further information: sara.donetto@kcl.ac.uk 2 PREFACE It is now almost 10 years since what has become the Experience-based Co-design (EBCD) approach to improving patient experience was first planned and piloted in a head & neck cancer service at Luton & Dunstable NHS hospital in England. A decade on and the roots of over 80 projects in seven different countries can be traced back to the hard work and commitment of the coming together of a small group of staff, patients and carers involved in that original work. Over time, naturally and quite rightly, the original 'blueprint' for EBCD has bee...
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To identify and examine mechanisms through which patients' experiences of chronic disease can be accessed, understood, and used to improve outcomes, health care costs, and quality of life for individual patients. Interpretive... more
To identify and examine mechanisms through which patients' experiences of chronic disease can be accessed, understood, and used to improve outcomes, health care costs, and quality of life for individual patients. Interpretive synthesis of the research literature on chronic disease and associated areas of clinical practice and service development. Searches of electronic databases (MEDLINE, EMBASE, and British Nursing Index), Internet searches, and snowballing techniques identified 66 relevant publications. The analysis focused on identifying mechanisms; their strengths, weaknesses, and impact. Ten mechanisms were identified, each with differing potential to access and reach patients; involve patients in decisions about what information is important; enable patients to share experiences/expertise and validate their knowledge; allow professionals and patients to deliberate and build understanding; support shared decision-making, continuity/partnership development, and potential to ...
ABSTRACT Over the last decade, growing attention has been paid to the potential value of design theory and practice in improving public services. Experience-based Co-design (EBCD) is a participatory research approach that draws upon... more
ABSTRACT Over the last decade, growing attention has been paid to the potential value of design theory and practice in improving public services. Experience-based Co-design (EBCD) is a participatory research approach that draws upon design tools and ways of thinking in order to bring healthcare staff and patients together to improve the quality of care. The co-design process that is integral to EBCD is powerful but also challenging, as it requires both staff and patients to renegotiate their roles and expectations as part of a reconfiguration of the relationships of power between citizens and public services. In this paper, we reflect upon the implementation and adaptation of EBCD in a variety of projects and on the challenges of co-design work within healthcare settings. Our discussion aims to contribute to the growing field of service design and to encourage further research into how co-design processes shape – and are shaped by – the power relations that characterize contemporary public services.
Supporting someone through chemotherapy can be emotionally and physically demanding. However, research has yet to establish the type of support carers require or the best way to provide this. This study tested the feasibility and... more
Supporting someone through chemotherapy can be emotionally and physically demanding. However, research has yet to establish the type of support carers require or the best way to provide this. This study tested the feasibility and acceptability of a complex intervention for carers that was co-designed by staff and carers of patients starting chemotherapy. Forty-seven carers were recruited, randomised between the intervention (n = 24) and control (n = 23) groups. A questionnaire was completed pre- and post-intervention measuring knowledge of chemotherapy and its side effects, experience of care, satisfaction with outpatient services, coping and emotional wellbeing. The intervention process was evaluated by carers and healthcare professionals (HCPs) in focus groups. Recruitment to the study was unproblematic and attrition from it was low, suggesting the intervention and study processes were acceptable to patients and carers. Carers in receipt of the 'Take Care' intervention rep...
The progress of the Productive Ward programme has been variable. This article outlines a study that investigated the experience of implementing the programme in different hospitals and the lessons that can be learnt.
To evaluate an accelerated form of experience-based co-design (EBCD), a type of participatory action research in which patients and staff work together to improve quality; to observe how acceleration affected the process and outcomes of... more
To evaluate an accelerated form of experience-based co-design (EBCD), a type of participatory action research in which patients and staff work together to improve quality; to observe how acceleration affected the process and outcomes of the intervention. An ethnographic process evaluation of an adapted form of EBCD was conducted, including observations, interviews, questionnaires and documentary analysis. Whilst retaining all components of EBCD, the adapted approach replaced local patient interviews with secondary analysis of a national archive of patient experience narratives to create national trigger films; shortened the timeframe; and employed local improvement facilitators. It was tested in intensive care and lung cancer in two English National Health Service (NHS) hospitals. A total of 96 clinical staff (primarily nursing and medical), and 63 patients and family members participated in co-design activities. The accelerated approach proved acceptable to staff and patients; usin...
Little is understood about the role of quality improvement in enabling health organisations to survive and thrive in the contemporary context of financial and economic challenges. We will draw on the theoretical foundations of the... more
Little is understood about the role of quality improvement in enabling health organisations to survive and thrive in the contemporary context of financial and economic challenges. We will draw on the theoretical foundations of the 'Resource Based View of the Firm' (RBV) to develop insights into why health organisations engage in improvement work, how impacts are conceptualised, and 'what works' in delivering these impacts. Specifically, RBV theorises that the mix and use of resources across different organisations may explain differences in performance. Whether improvement work influences these resources is unclear. Case study research will be conducted across health organisations participating in four approaches to improvement, including: a national improvement programme; a multiorganisational partnership around implementation; an organisational strategy for quality improvement; and a coproduction project designed to enhance the experience of a clinical service from...
We trace the legacies of filmed patient narratives that were edited and screened to encourage engagement with a participatory quality improvement project in an acute hospital setting in England. Using Gabriel's theory of... more
We trace the legacies of filmed patient narratives that were edited and screened to encourage engagement with a participatory quality improvement project in an acute hospital setting in England. Using Gabriel's theory of "narrative contract," we examine the initial success of the films in establishing common grounds for participatory project and later, and more varied, interpretations of the films. Over time, the films were interpreted by staff as either useful sources of learning by critical reflection, dubious (invalid or unreliable) representations of patient experience, or as "closed" items available as auditable evidence of completed quality improvement work. We find these interpretations of the films to be shaped by the effect of social distance, the differential outcomes of project work, and changing organizational agendas. We consider the wider conditions of patient narrative as a form of quality improvement knowledge with immediate potency and fragil...
Objectives: To use a national video archive of patient experience narratives to develop, test and evaluate a rapid patient-centred quality improvement approach ('Accelerated Experience-based Co-design' or AEBCD). The intervention... more
Objectives: To use a national video archive of patient experience narratives to develop, test and evaluate a rapid patient-centred quality improvement approach ('Accelerated Experience-based Co-design' or AEBCD). The intervention was an adapted form of Experience-based Co-design (EBCD), a participatory action research approach in which patients and staff work together to redesign care. EBCD draws on transportation theory and narrative persuasion, using locally collected video patient narratives to help staff see through patients’ eyes. The accelerated intervention used national rather than local patient narratives (in lung cancer and intensive care). This shortened the timetable from 12 to 6 months and halved costs. Evaluation: An ethnographic process evaluation was conducted, including observations, interviews, questionnaires, and cost and documentary analysis (including comparison with previous EBCD evaluations). Results: A total of 96 staff members and 63 patients partici...
Amid a welter of simultaneous policy initiatives, treatment centres were a top-down NHS innovation that became subverted into a multiplicity of solutions to different local problems. This highly readable account of how and why they... more
Amid a welter of simultaneous policy initiatives, treatment centres were a top-down NHS innovation that became subverted into a multiplicity of solutions to different local problems. This highly readable account of how and why they evolved with completely unforeseen results reveals clear, practical lessons based on case study research involving over 200 interviews. Policy makers, managers and clinicians undertaking any organisational innovation cannot afford to ignore these findings. The authors are a multidisciplinary team of senior and internationally recognised researchers from the Universities of London and Southampton. John Gabbay researches into the way that knowledge enters policy and practice in organisations. Andrée le May is renowned for her work on knowledge in practice. Catherine Pope is a distinguished qualitative methodologist with long experience in ethnographic research in healthcare. Glenn Robert specialises in organisational studies on quality and service improveme...
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