Using creative co-design to develop a decision support tool for people with malignant pleural effusion.

BACKGROUND: Malignant pleural effusion (MPE) is a common, serious problem predominantly seen in metastatic lung and breast cancer and malignant pleural mesothelioma. Recurrence of malignant pleural effusion is common, and symptoms significantly impair people's daily lives. Numerous treatment options exist, yet choosing the most suitable depends on many factors and making decisions can be challenging in pressured, time-sensitive clinical environments. Clinicians identified a need to develop a decision support tool. This paper reports the process of co-producing an initial prototype tool. METHODS: Creative co-design methods were used. Three pleural teams from three disparate clinical sites in the UK were involved. To overcome the geographical distance between sites and the ill-health of service users, novel distributed methods of creative co-design were used. Local workshops were designed and structured, including video clips of activities. These were run on each site with clinicians, patients and carers. A joint national workshop was then conducted with representatives from all stakeholder groups to consider the findings and outputs from local meetings. The design team worked with participants to develop outputs, including patient timelines and personas. These were used as the basis to develop and test prototype ideas. RESULTS: Key messages from the workshops informed prototype development. These messages were as follows. Understanding and managing the pleural effusion was the priority for patients, not their overall cancer journey. Preferred methods for receiving information were varied but visual and graphic approaches were favoured. The main influences on people's decisions about their MPE treatment were personal aspects of their lives, for example, how active they are, what support they have at home. The findings informed the development of a first prototype/service visualisation (a video representing a web-based support tool) to help people identify personal priorities and to guide shared treatment decisions. CONCLUSION: The creative design methods and distributed model used in this project overcame many of the barriers to traditional co-production methods such as power, language and time. They allowed specialist pleural teams and service users to work together to create a patient-facing decision support tool owned by those who will use it and ready for implementation and evaluation.

A Virtual Agent to Support Individuals Living With Physical and Mental Comorbidities: Co-Design and Acceptability Testing.

BACKGROUND: Individuals living with long-term physical health conditions frequently experience co-occurring mental health problems. This comorbidity has a significant impact on an individual's levels of emotional distress, health outcomes, and associated health care utilization. As health care services struggle to meet demand and care increasingly moves to the community, digital tools are being promoted to support patients to self-manage their health. One such technology is the autonomous virtual agent (chatbot, conversational agent), which uses artificial intelligence (AI) to process the user's written or spoken natural language and then to select or construct the corresponding appropriate responses. OBJECTIVE: This study aimed to co-design the content, functionality, and interface modalities of an autonomous virtual agent to support self-management for patients with an exemplar long-term condition (LTC; chronic pulmonary obstructive disease [COPD]) and then to assess the acceptability and system content. METHODS: We conducted 2 co-design workshops and a proof-of-concept implementation of an autonomous virtual agent with natural language processing capabilities. This implementation formed the basis for video-based scenario testing of acceptability with adults with a diagnosis of COPD and health professionals involved in their care. RESULTS: Adults (n=6) with a diagnosis of COPD and health professionals (n=5) specified 4 priority self-management scenarios for which they would like to receive support: at the time of diagnosis (information provision), during acute exacerbations (crisis support), during periods of low mood (emotional support), and for general self-management (motivation). From the scenario testing, 12 additional adults with COPD felt the system to be both acceptable and engaging, particularly with regard to internet-of-things capabilities. They felt the system would be particularly useful for individuals living alone. CONCLUSIONS: Patients did not explicitly separate mental and physical health needs, although the content they developed for the virtual agent had a clear psychological approach. Supported self-management delivered via an autonomous virtual agent was acceptable to the participants. A co-design process has allowed the research team to identify key design principles, content, and functionality to underpin an autonomous agent for delivering self-management support to older adults living with COPD and potentially other LTCs.

Co-creation and co-production in health service delivery: what is it and what impact can it have?

EBN engages through a range of online social media activities to debate issues important to nurses and nursing. EBN Opinion papers highlight and expand on these debates.

'Collective making' as knowledge mobilisation: the contribution of participatory design in the co-creation of knowledge in healthcare.

The discourse in healthcare Knowledge Mobilisation (KMb) literature has shifted from simple, linear models of research knowledge production and action to more iterative and complex models. These aim to blend multiple stakeholders' knowledge with research knowledge to address the research-practice gap. It has been suggested there is no 'magic bullet', but that a promising approach to take is knowledge co-creation in healthcare, particularly if a number of principles are applied. These include systems thinking, positioning research as a creative enterprise with human experience at its core, and paying attention to process within the partnership. This discussion paper builds on this proposition and extends it beyond knowledge co-creation to co-designing evidenced based interventions and implementing them. Within a co-design model, we offer a specific approach to share, mobilise and activate knowledge, that we have termed 'collective making'. We draw on KMb, design, wider literature, and our experiences to describe how this framework supports and extends the principles of co-creation offered by Geenhalgh et al. [1] in the context of the state of the art of knowledge mobilisation. We describe how collective making creates the right 'conditions' for knowledge to be mobilised particularly addressing issues relating to stakeholder relationships, helps to discover, share and blend different forms of knowledge from different stakeholders, and puts this blended knowledge to practical use allowing stakeholders to learn about the practical implications of knowledge use and to collectively create actionable products. We suggest this collective making has three domains of influence: on the participants; on the knowledge discovered and shared; and on the mobilisation or activation of this knowledge.

Participatory design facilitates Person Centred Nursing in service improvement with older people: a secondary directed content analysis.

AIMS AND OBJECTIVES: To explore, using the example of a project working with older people in an outpatient setting in a large UK NHS Teaching hospital, how the constructs of Person Centred Nursing are reflected in interviews from participants in a Co-design led service improvement project. BACKGROUND: Person Centred Care and Person Centred Nursing are recognised terms in healthcare. Co-design (sometimes called participatory design) is an approach that seeks to involve all stakeholders in a creative process to deliver the best result, be this a product, technology or in this case a service. Co-design practice shares some of the underpinning philosophy of Person Centred Nursing and potentially has methods to aid in Person Centred Nursing implementation. RESEARCH DESIGN: The research design was a qualitative secondary Directed analysis. METHODS: Seven interview transcripts from nurses and older people who had participated in a Co-design led improvement project in a large teaching hospital were transcribed and analysed. Two researchers analysed the transcripts for codes derived from McCormack & McCance's Person Centred Nursing Framework. RESULTS: The four most expressed codes were as follows: from the pre-requisites: knowing self; from care processes, engagement, working with patient's beliefs and values and shared Decision-making; and from Expected outcomes, involvement in care. This study describes the Co-design theory and practice that the participants responded to in the interviews and look at how the co-design activity facilitated elements of the Person Centred Nursing framework. CONCLUSIONS: This study adds to the rich literature about using emancipatory and transformational approaches to Person Centred Nursing development, and is the first study exploring explicitly the potential contribution of Co-design to this area. IMPLICATIONS FOR PRACTICE: Methods from Co-design allow older people to contribute as equals in a practice development project, co-design methods can facilitate nursing staff to engage meaningfully with older participants and develop a shared understanding and goals. The co-produced outputs of Co-design projects embody and value the expressed beliefs and values of staff and older people.

A positive deviant approach to examining the impact of Covid-19 on ethnic inequalities in maternal and neonatal outcomes.

OBJECTIVES: During the COVID-19 pandemic, rapid and heterogeneous changes were made to maternity care. Identification of changes that may reduce maternal health inequalities is a national priority. The aim of this project was to use data collected about care and outcomes to identify NHS Trusts in the UK where inequalities in outcomes reduced during the pandemic and explore through interviews how the changes that occurred may have led to a reduction in inequalities. METHODS: A Women's Reference Group of public advisors guided the project. Analysis of Hospital Episode Statistics Admitted Patient Care data of 128 organisations in England identified "positive deviant" organisations that reduced inequalities, using maternal and perinatal composite adverse outcome indicators. Positive deviant organisations were identified for investigation, alongside comparators. Senior clinicians, heads of midwifery and representatives of women giving birth were interviewed. Reflexive thematic analysis was employed. RESULTS: The change in the inequality gap for the maternal indicator ranged from a reduction of -0.24 to an increase of 0.30 per 1000 births between the pre-pandemic and pandemic period. For the perinatal composite indicator, the change in inequality gap ranged from -0.47 to 0.67 per 1000 births. Nine Trusts were identified as positive deviants and 10 as comparators. We conducted 20 interviews from six positive deviant and four comparator organisations. Positive deviants reported that necessary shifts in roles led to productive and novel use of expert staff; comparators reported senior staff 'stepping in' where needed and no benefits of this. They reported proactivity and quick reactions, increased team working, and rapid implementation of new ideas. Comparators found constant changes overwhelming, and no increase in team working. No specific differences in care processes were identified. CONCLUSIONS: Harnessing proactivity, flexibility, staffing resource, and increased team working proves vital in reducing health inequalities.

Leading co-production in five UK collaborative research partnerships (2008-2018): responses to four tensions from senior leaders using auto-ethnography.

BACKGROUND: Despite growing enthusiasm for co-production in healthcare services and research, research on co-production practices is lacking. Multiple frameworks, guidelines and principles are available but little empirical research is conducted on 'how to do' co-production of research to improve healthcare services. This paper brings together insights from UK-based collaborative research partnerships on leading co-production. Its aim is to inform practical guidance for new partnerships planning to facilitate the co-production of applied health research in the future. METHODS: Using an auto-ethnographic approach, experiential evidence was elicited through collective sense making from recorded conversations between the research team and senior leaders of five UK-based collaborative research partnerships. This approach applies a cultural analysis and interpretation of the leaders' behaviours, thoughts and experiences of co-production taking place in 2008-2018 and involving academics, health practitioners, policy makers and representatives of third sector organisations. RESULTS: The findings highlight a variety of practices across CLAHRCs, whereby the intersection between the senior leaders' vision and local organisational context in which co-production occurs largely determines the nature of co-production process and outcomes. We identified four tensions in doing co-production: (1) idealistic, tokenistic vs realistic narratives, (2) power differences and (lack of) reciprocity, (3) excluding vs including language and communication, (4) individual motivation vs structural issues. CONCLUSIONS: The tensions were productive in helping collaborative research partnerships to tailor co-production practices to their local needs and opportunities. Resulting variation in co-production practices across partnerships can therefore be seen as highly advantageous creative adaptation, which makes us question the utility of seeking a unified 'gold standard' of co-production. Strategic leadership is an important starting point for finding context-tailored solutions; however, development of more distributed forms of leadership over time is needed to facilitate co-production practices between partners. Facilitating structures for co-production can enable power sharing and boost capacity and capability building, resulting in more inclusive language and communication and, ultimately, more credible practices of co-production in research. We provide recommendations for creating more realistic narratives around co-production and facilitating power sharing between partners.

The Shared Safety Net Action Plan (SSNAP): a co-designed intervention to reduce delays in cancer diagnosis.

BACKGROUND: Safety netting in primary care may help diagnose cancer earlier, but it is unclear what the format and content of an acceptable safety-netting intervention would be. This project aimed to co-design a safety-netting intervention with and for primary care patients and staff. AIM: This work sought to address how a safety-netting intervention would be implemented in practice; and, if and how a safety-netting intervention would be acceptable to all stakeholders. DESIGN AND SETTING: Patient representatives, GPs, and nurse practitioners were invited to a series of co-design workshops. Patients who had and had not received a diagnosis of cancer and primary care practices took part in separate focus groups. METHOD: Three workshops using creative co-design processes developed the format and content of the intervention prototype. The COM-B Framework underpinned five focus groups to establish views on capability, opportunity, and motivation to use the intervention to assist with prototype refinement. RESULTS: Workshops and focus groups suggested the intervention format and content should incorporate visual and written communication specifying clear timelines for monitoring symptoms and when to present back; be available in paper and electronic forms linked to existing computer systems; and be able to be delivered within a 10-minute consultation. Intervention use themes included 'building confidence through partnership', 'using familiar and current procedures and systems', and 'seeing value'. CONCLUSION: The Shared Safety Net Action Plan (SSNAP) - a safety-netting intervention to assist the timely diagnosis of cancer in primary care, was successfully co-designed with and for patients and primary care staff.

OASI2: a cluster randomised hybrid evaluation of strategies for sustainable implementation of the Obstetric Anal Sphincter Injury Care Bundle in maternity units in Great Britain.

BACKGROUND: The Obstetric Anal Sphincter Injury (OASI) Care Bundle comprises four primary and secondary prevention practices that target the rising rates of severe perineal tearing during childbirth, which can have severe debilitating consequences for women. The OASI Care Bundle was implemented in 16 maternity units in Britain in the OASI1 project (2017-2018), which demonstrated the care bundle's effectiveness in reducing OASI rates. In OASI2, the care bundle will be scaled up to 20 additional National Health Service (NHS) maternity units in a hybrid effectiveness-implementation study that will examine the effectiveness of strategies used to introduce, implement and sustain the care bundle. METHODS: OASI2 is a two-arm cluster-randomised control trial (C-RCT) of maternity units in England, Scotland and Wales, with an additional non-randomised study arm. C-RCT arm 1 (peer support, n = 10 units) will be supported by 'buddy' units to implement the OASI Care Bundle. C-RCT arm 2 (lean implementation, n = 10 units) will implement without external support. The additional study arm (sustainability, n = 10 units) will include some original OASI1 units to evaluate the care bundle's sustainability and OASI rates over time, from before OASI1 and through the end of OASI2. Units in all three study arms will receive an Implementation Toolkit with training resources and implementation support. The C-RCT arms will be compared in terms of OASI rate reduction (primary effectiveness outcome) and clinicians' adoption of the care bundle (primary implementation outcome). Clinical data will be collated from maternity information systems; implementation data will be collected through validated surveys with women and clinicians, supplemented by qualitative methods. Descriptive statistics and regression modelling will be used for analysis. Emergent themes from the qualitative data will be assessed using framework analysis. DISCUSSION: OASI2 will study the impact of various implementation strategies used to introduce and sustain the OASI Care Bundle, and how these strategies affect the bundle's clinical effectiveness. The study will generate insights into how to effectively scale-up and sustain uptake and coverage of similar interventions in maternity units. A locally adaptable 'implementation blueprint' will be produced to inform development of future guidelines to prevent perineal trauma. TRIAL REGISTRATION: ISRCTN26523605.

Innovating access to the nurse-led hepatitis C clinic using co-production.

BACKGROUND: Many reasons for missed appointments are given by people who inject drugs and it is suggested that one solution cannot solve this complex issue (Poll et al., 2017). Increasingly, nurses and other health professionals are expected to actively involve patients and service users in developing innovative, effective and accessible services. This project used co-production as the approach to address this challenge. AIMS: This paper describes how a co-production method was used to develop accessible nurse-led hepatitis C virus services for people who inject drugs. METHODS: Using research evidence from a study conducted by the lead author as a starting point, a series of co-production workshops were run using creative co-design methods to identify the barriers to engagement with clinics. Potential solutions were then co-produced. RESULTS: The solutions included myth-busting posters, peer-support, a mobile clinic van and the offer of incentives and enablers (travel costs or a reward for attendance). CONCLUSIONS: The service-development project illustrates how, with the right methods, it is possible to successfully engage with hard-to-access groups to co-produce innovative solutions for an important clinical challenge.

Patient experience and reflective learning (PEARL): a mixed methods protocol for staff insight development in acute and intensive care medicine in the UK.

INTRODUCTION: Patient and staff experiences are strongly influenced by attitudes and behaviours, and provide important insights into care quality. Patient and staff feedback could be used more effectively to enhance behaviours and improve care through systematic integration with techniques for reflective learning. We aim to develop a reflective learning framework and toolkit for healthcare staff to improve patient, family and staff experience. METHODS & ANALYSIS: Local project teams including staff and patients from the acute medical units (AMUs) and intensive care units (ICUs) of three National Health Service trusts will implement two experience surveys derived from existing instruments: a continuous patient and relative survey and an annual staff survey. Survey data will be supplemented by ethnographic interviews and observations in the workplace to evaluate barriers to and facilitators of reflective learning. Using facilitated iterative co-design, local project teams will supplement survey data with their experiences of healthcare to identify events, actions, activities and interventions which promote personal insight and empathy through reflective learning. Outputs will be collated by the central project team to develop a reflective learning framework and toolkit which will be fed back to the local groups for review, refinement and piloting. The development process will be mapped to a conceptual theory of reflective learning which combines psychological and pedagogical theories of learning, alongside theories of behaviour change based on capability, opportunity and motivation influencing behaviour. The output will be a locally-adaptable workplace-based toolkit providing guidance on using reflective learning to incorporate patient and staff experience in routine clinical activities. ETHICS & DISSEMINATION: The PEARL project has received ethics approval from the London Brent Research Ethics Committee (REC Ref 16/LO/224). We propose a national cluster randomised step-wedge trial of the toolkit developed for large-scale evaluation of impact on patient outcomes.

The TiM system: developing a novel telehealth service to improve access to specialist care in motor neurone disease using user-centered design.

OBJECTIVES: Attendance at a specialist multidisciplinary motor neurone disease (MND) clinic is associated with improved survival and may also improve quality of life and reduce hospital admissions. However, patients struggle to travel to clinic and may experience difficulties between clinic visits that may not be addressed in a timely manner. We wanted to explore how we could improve access to specialist MND care. METHODS: We adopted an iterative, user-centered co-design approach, collaborating with those with experience of providing and receiving MND care including patients, carers, clinicians, and technology developers. We explored the unmet needs of those living with MND, how they might be met through service redesign and through the use of digital technologies. We developed a new digital solution and performed initial testing with potential users including clinicians, patients, and carers. RESULTS: We used these findings to develop a telehealth system (TiM) using an Android app into which patients and carers answer a series of questions about their condition on a weekly basis. The questions aim to capture all the physical, emotional, and social difficulties associated with MND. This information is immediately uploaded to the internet for review by the MND team. The data undergoes analysis in order to alert clinicians to any changes in a patient or carer's condition. CONCLUSIONS: We describe the benefits of developing a novel digitally enabled service underpinned by participatory design. Future trials must evaluate the feasibility and acceptability of the TiM system within a clinical environment.

Improving self-efficacy in spinal cord injury patients through "design thinking" rehabilitation workshops.

Advances in surgical and medical management have significantly reduced the length of time that patients with spinal cord injury (SCI) have to stay in hospital, but has left patients with potentially less time to psychologically adjust. Following a pilot in 2012, this project was designed to test the effect of "design thinking" workshops on the self-efficacy of people undergoing rehabilitation following spinal injuries. Design thinking is about understanding the approaches and methods that designers use and then applying these to think creatively about problems and suggest ways to solve them. In this instance, design thinking is not about designing new products (although the approaches can be used to do this) but about developing a long term creative and explorative mind-set through skills such as lateral thinking, prototyping and verbal and visual communication. The principles of "design thinking" have underpinned design education and practice for many years, it is also recognised in business and innovation for example, but a literature review indicated that there was no evidence of it being used in rehabilitation or spinal injury settings. Twenty participants took part in the study; 13 (65%) were male and the average age was 37 years (range 16 to 72). Statistically significant improvements were seen for EQ-5D score (t = -3.13, p = 0.007) and Patient Activation Measure score (t = -3.85, p = 0.001). Other outcome measures improved but not statistically. There were no statistical effects on length of stay or readmission rates, but qualitative interviews indicated improved patient experience.

Engaging teenagers productively in service design.

Engaging young people in participatory design can be challenging, particularly in health-related projects. In a study co-designing diabetes support and information services with teenagers, we found framing activities using popular culture was a useful strategy. Various cultural references helped us stage activities that were productive for the design process, and were engaging for our young participants (e.g. exploring practical implications through discussions in a 'Dragons' Den'). Some activities were more effective than others and the idea of language-games, which has been widely explored in participatory design, explains why our strategy was successful when there was a clear 'family resemblance' between the popular cultural references and certain essential stages of designing. However, attention is required in selecting appropriate cultural references if this strategy is adopted elsewhere, and design facilitators should focus first on devising accessible language-games, rather than expecting popular cultural references to provide complete solutions to the challenge of staging participatory design.