Glenn Robert

King's College London | KCL · Florence Nightingale Faculty of Nursing Midwifery and Palliative Care

Abstract This article is a response to Oliver et al.’s Commentary ‘The dark side of coproduction: do the costs outweigh the benefits for health research?’ recently published in Health Research Policy and Systems (2019, 17:33). The original commentary raises some important questions about how and when to co-produce health research, including highlig...

Many healthcare improvement approaches originated in manufacturing, where end users are framed as consumers. But in healthcare, greater recognition of the complexity of relationships between patients, staff, and services (beyond a provider-consumer exchange) is generating new insights and approaches to healthcare improvement informed directly by pa...

Background: Innovations in coproduction are shaping public service reform in diverse contexts around the world. Although many innovations are local, others have expanded and evolved over time. We know very little, however, about the process of implementation and evolution of coproduction. The purpose of this study was to explore the adoption, imple...

Glenn Robert and colleagues describe an approach that aims to ensure that healthcare organisations realise the full potential of patients—the biggest resource they have for improving the quality of care

Introduction: Increased interest in collaborative and inclusive approaches to healthcare improvement makes revisiting Elinor Ostrom’s ‘design principles’ for enabling collective management of common pool resources (CPR) in polycentric systems a timely endeavour. Theory and method: Ostrom proposed a generalisable set of eight core design principles...

Introduction People with type 2 diabetes can experience diabetes distress which can negatively affect health outcomes. Non-pharmacological interventions such as mindfulness can help address diabetes distress. However, face-to-face programmes can be constrained by cost, poor accessibility and lack of availability. Mobile apps for mindfulness may ove...

Background: Parents of infants admitted to neonatal intensive care require support to minimize the impact on their mental health and to encourage engagement with their infants to support infant neurodevelopment. Many interventions aim to address this need, but there is a lack of research considering the accessibility of these for a multicultural po...

Objectives Analyse reported processes of co-design and co-production in the context of health and social care to explore the underlying mechanisms that enable inclusive and reciprocal engagement. Search strategy Peer review research was obtained from a prior scoping review searching eight databases consisting of all methodologies relevant to co-de...

On September 24, 2024, academic, clinical, health, social and voluntary care, and national and regional political and governmental policy leaders will meet in London to discuss and shape the launch of the Better Health and Care Futures initiative led by King’s College London, with follow-up events across the United Kingdom. The attendees will be aw...

Background: Co-designing healthcare interventions is gaining recognition as a novel and collaborative method. Co-design involves end-users from the start, ensuring that an intervention best meets their needs. Despite its potential benefits, this approach is not yet widely used in developing clinical interventions within intensive care units where t...

Introduction Initiating insulin therapy in older individuals with type 2 diabetes (T2DM) poses unique challenges and requires a nuanced understanding of the age-related factors that impact safety and efficacy. This study employed Experience-Based Co-Design (EBCD) to enhance the insulin initiation and management experience for this population, empha...

Background: Recent years have seen a dramatic growth in interest in the nature and extent of co-production in the health and social care sectors. Due to the intense proliferation of work on co-production, there is intense variation in practice in how co-production is defined, understood and used in practice. Methods: We conducted a narrative revi...

Background Experience‐Based Co‐Design (EBCD) is a multi‐stage participatory action research process which was developed originally to increase patient involvement in service improvement initiatives. This viewpoint article serves as a reflection on the researchers' experiences, focusing on the application and feasibility of participatory approaches,...

Background: Parents of children with hemiplegic cerebral palsy are increasingly involved in therapy intervention delivery. Enhancing the ways that parents are supported in delivery is key to optimising outcomes. This study aimed to refine an existing programme in England to better support parents partnering in their child's intervention delivery. M...

Background There is a rising prevalence of type 2 diabetes among older people. This population also suffers from co-morbidity and a greater number of diabetes related complications, such as visual and cognitive impairment, which can potentially affect their ability to manage insulin regimens. Understanding the experiences of older people when they...

Purpose: Empowering parents to deliver evidenced-based interventions improves outcomes for children with or infants at risk of cerebral palsy (CP), by integrating repetition and contextual learning into daily routines. We aimed to identify the barriers and facilitators to parent-delivered interventions and suggest practice improvements guided by be...

Background: Paediatric Rheumatology is a term that encompasses over 80 conditions affecting different organs and systems. Children and young people with rheumatological chronic conditions are known to have high levels of mental health problems and therefore are at risk of poor health outcomes. Clinical psychologists can help children and young peop...

Background Some research has been undertaken into the mechanisms that shape successful participatory approaches in the context of efforts to improve health and social care. However, greater attention needs to be directed to how partnerships between researchers and user-led organisations (ULOs) might best be formed, practiced , managed, and assessed...

While the potential benefits of co-production and co-creation are widely vaunted, the degree to which they precipitate innovative change in systems varies, and influences on their impact demand greater attention. We present an ethnographic study of organizations intended to foster co-creation in English health and social care. Comparing five cases,...

Background Innovations in coproduction are shaping public service reform in diverse contexts around the world. Although many innovations are local, others have expanded and evolved over time. We know very little, however, about the process of implementation and evolution of coproduction. The purpose of this study was to explore the adoption, implem...

Background Co-production is promoted as an effective way of improving the quality of health and social care but the diversity of measures used in individual studies makes their outcomes difficult to interpret. Objective The objective is to explore how empirical studies in health and social care have described the outcomes of co-production projects...

Purpose: to investigate ethnographically how patient experience data, as a named category in healthcare organisations, is actively ‘made’ through the co-creative interactions of data, people, and meanings in English hospitals. Design: we draw on fieldnotes, interview recordings and transcripts produced from 13 months (2016-2017) of ethnographic re...

This study explored the feasibility of using an experience-based co-design service improvement methodology to develop a new approach to managing multimorbidity in people living with HIV. Patients with HIV and multimorbidity and staff were recruited from five hospital departments and general practice. Staff and patient experiences were gathered thro...

The value of co-produced research is increasingly recognised. This is a case study of a lay conducted, co-produced qualitative research study on the experiences of social workers’ and Disabled users of their services of using (or not) digital technologies when communicating with each other. We describe the co-production process from inception to di...

BACKGROUND Co-production is increasingly promoted as an effective way of improving the quality of health and social care services as well as a means of recognizing and promoting the equal value of the contributions of both users and service providers. Given the diversity of measurements used to assess the impact of co-production, potential outcomes...

Background Local Healthwatch organisations are an important part of the landscape of health and care commissioning and provision in England. In addition, local Healthwatch organisations are a key means by which users of services are given voice to influence decisions about health and care commissioning and provision. Objective We aimed to explore...

Background Type 2 diabetes mellitus is common in older people. Managing diabetes in older people can be challenging due to comorbidities and age-related disabilities, particularly in the context of insulin therapy. The purpose of this review is to explore older people’s experiences of insulin use and to consider how these experiences might inform h...

Background: Patient and Public Involvement is most usually framed in the context of designing, conducting and/or disseminating research. Participatory methods such as Experience-Based Co-Design (EBCD) further allow service users to directly engage in developing, testing and implementing interventions and services alongside healthcare staff. This p...

Objective: This study aims to co-design an evidence- and theory-based behavioural intervention to reduce the impact of chemotherapy-induced peripheral neuropathy (CIPN) symptoms on patients' quality of life. Methods: Guided by the Medical Research Council Framework for developing and evaluating complex interventions, our intervention development...

The communication of genomic results to patients and families with rare diseases raise distinctive challenges. However, there is little evidence about optimal methods to communicate results to this group of service users. To address this gap, we worked with rare disease families and health professionals from two genetic/genomic services, one in the...

IMPACT This article provides a way to promote more effective and equitable collaboration in the design and delivery of public services. Increasingly public services are designed with service users, but it is common for these provider–user endeavours to perform sub-optimally and/or to have negative outcomes. The authors offer a set of principles and...

Background Patient & Public Involvement is most usually framed in the context of designing, conducting and/or disseminating research. Participatory methods such as Experience-Based Co-Design (EBCD) further allow service users to directly engage in developing, testing and implementing interventions and services alongside healthcare staff. This paper...

Objectives This study aimed to explore how the concepts of co‐production and co‐design have been defined and applied in the context of health and social care and to identify the temporal adoption of the terms. Methods A systematic scoping review of CINAHL with Full Text, Cochrane Central Register of Controlled Trials, MEDLINE, PsycINFO, PubMed and...

Aim This systematic review aimed to provide new insights into how pharmacy spaces, or the architecture of pharmacies, are experienced by pharmacy service users and staff. The review sought to identify environmental factors which may influence service users’ and staff participation in community-based pharmacy health services. Method Ten databases w...

Aim To develop a cognitive behavioural therapy based intervention for people with type 1 diabetes and disordered eating using Experience-Based Co-Design as part of the Safe management of people with Type 1 diabetes and EAting Disorders studY (STEADY). Methods Fifteen people with type 1 diabetes and experience of disordered eating (33±11 years old,...

This paper describes an Experience-based Co-design (EBCD) project that aimed to increase patient activity within an acute stroke unit. We apply the concept of liminality to explore ways in which the EBCD process, a form of Participatory Action Research, may dilute or even dissolve social hierarchies and challenge assumptions about practices and con...

OBJECTIVE: To develop supportive interventions for adults with new-onset type 1 diabetes (T1D) to facilitate positive adaptive strategies during their transition into a life with diabetes. DESIGN: The study used a co-design approach informed by Design Thinking to stimulate participants’ reflections on their experiences of current care and generate...

Objective: To improve patient experience of chemotherapy-induced peripheral neuropathy (CIPN), it is crucial to identify how patients develop their understanding and perception of CIPN. A wider understanding of the experiences of clinicians who provide CIPN information and support is also needed. This study explored clinician and patient experienc...

Purpose Undergoing an amputation is a life-altering experience that can involve a protracted and intensive period of care from a range of healthcare professionals. Amputation care within the NHS has historically been criticised. Here we seek to understand how patients are experiencing care by exploring their stories and identifying features of both...

Background The early stages of the coronavirus disease 2019 pandemic prompted unprecedented displays of gratitude to healthcare workers. In the United Kingdom, gratitude was a hotly debated topic in public discourse, catalysing compelling displays of civic togetherness but also attracting criticism for being an unhelpful distraction that authorized...

Purpose The processes and mechanisms of action which explain how behavioural interventions for chemotherapy-induced peripheral neuropathy (CIPN) work or not are unclear. We describe a co-design process for developing an evidence and theory-based behavioural intervention to reduce the impact of CIPN symptoms on patients’ quality of life. Methods Gui...

Objectives Our objectives were threefold: (1) describe a collaborative, theoretically driven approach to co-designing complex interventions; (2) demonstrate the implementation of this approach to share learning with others; and (3) develop a toolkit to enhance therapeutic engagement on acute mental health wards. Design and participants We describe...

Over the last three decades, sociomaterial approaches to the study of health care practices have made an important contribution to the sociology of health care. Significant attention has been paid to the role of technology and artefacts in health care and the operation of actor-networks but less space has been given to questions of ontological mult...

Background Chemotherapy-induced peripheral neuropathy (CIPN) can result in functional difficulties. Pharmacological interventions used to prevent CIPN either show low efficacy or lack evidence to support their use and to date, duloxetine remains the only recommended treatment for painful CIPN. Non-pharmacological interventions such as exercise and...

The decommissioning of a health‐care service is invariably a highly complex and contentious process which faces many implementation challenges. There has been little specific theorisation of this phenomena, although insights can be transferred from wider literatures on policy implementation and change processes. In this paper, we present findings f...

Objective To explore facilitators and barriers to using experience-based co-design (EBCD) and accelerated EBCD (AEBCD) in the development and implementation of interventions to increase activity opportunities for inpatient stroke survivors. Design Mixed-methods process evaluation underpinned by normalisation process theory (NPT). Setting Four pos...

Nurse–patient therapeutic engagement on acute mental health wards is beneficial to service users’ outcomes and nurses’ job satisfaction. However, engagement is not always fulfilled in practice and interventions to improve engagement are sparse and ineffective. We explored the experiences of service users, carers, and clinicians drawing from 80 hour...

Health research has begun to pay increasing attention to inactivity in its broadest sense as lack of meaningful activity and boredom. Few studies however have taken a critical look at this phenomenon. We explore (in)activity drawing on ethnographic data from observations in an acute stroke unit and post-discharge interviews with stroke survivors an...

While the foundational studies by Ostrom et al. (1973, 1978) highlighted the significance of citizens in the ‘co-delivery’ of public services and outcomes, their subsequent work further specified that citizens could also fulfil an important role as designers of such services (Ostrom 1996). Later conceptualisations have proposed ‘co-design’ as a spe...

Background Lack of high-quality nurse-patient therapeutic engagement is a longstanding problem on acute mental health wards, with a dearth of interventions to address this. A collaborative, theory-driven approach to developing and implementing complex interventions is more likely to be effective and sustainable. This paper describes an integrated c...

Background Stroke patients are often inactive outside of structured therapy sessions – an enduring international challenge despite large scale organizational changes, national guidelines and performance targets. We examined whether experienced-based co-design (EBCD) – an improvement methodology – could address inactivity in stroke units. Aims To e...

Research into gratitude as a significant sociological and psychological phenomenon has proliferated in the past two decades. However, there is little consensus on how it should be conceptualized or investigated empirically. We present a meta-narrative review that focuses on gratitude in health care, with an emphasis on research exploring interperso...

Background Stroke is the most common neurological disability in the UK. Any activity contributes to recovery, but stroke patients can be inactive for > 60% of their waking hours. This problem remains, despite organisational changes and targeted interventions. A new approach to addressing post-stroke inactivity is needed. Experience-based co-design...

Background: Hospitals undertake numerous initiatives searching to improve the quality of care they provide, but these efforts are often disappointing. Current models guiding improvement tend to undervalue the tensional nature of hospitals. Applying a dualities approach that is sensitive to tensions inherent to hospitals' quest for improved quality...

The recent special issue ‘Inside Co-production’ (edited by Bevir et al. in Social Policy & Administration, 2019) of the journal Social Policy and Administration called for a ‘decentring of co-production’ (p. 199) by focusing attention on elite narratives, local traditions and resistance, and meaningful practices. We continue the analysis of these t...

Background Local Healthwatch have been operating since 2013 as ‘consumer champions’ in health and social care in England. There is little evidence about how they operate and the daily practices through which they seek to represent citizen views and influence others. Objective To explore (a) the current organizational arrangements, relationships an...

For many years, top-down performance management systems have strongly influenced organizing structures in the health sector (De Blok, 2010). Recently, new organizational forms based on self-governance have begun to emerge where authority is more widely distributed amongst healthcare staff and work is conducted by decentralized, self-managing teams...

Background: Hospital boards have statutory responsibility for upholding the quality of care in their organisations. International research on quality in hospitals resulted in a research-based guide to help senior hospital leaders develop and implement quality improvement (QI) strategies, the QUASER Guide. Previous research has established a link b...

Freebirthing is a clandestine practice whereby women intentionally give birth without healthcare professionals (HCPs) present in countries where there are medical facilities available to assist them. Women who make this decision are frequently subjected to stigma and condemnation, yet research on the phenomenon suggests that women’s motivations are...

Productive Ward: Releasing Time to Care™ was a large-scale nursing quality-improvement programme introduced to English acute trusts a decade ago to improve productivity and reduce wastage on the ward. A multi-methods study looked at what remains of the programme today, how it was implemented and whether it has had any lasting impact. It concludes t...

Background Although NHS organisations have access to a wealth of patient experience data in various formats (e.g. surveys, complaints and compliments, patient stories and online feedback), not enough attention has been paid to understanding how patient experience data translate into improvements in the quality of care. Objectives The main aim was...