Co‐creating system‐wide improvement for people with traumatic brain injury across one integrated care system in the United Kingdom to initiate a transformation journey through co‐production

There is a need for better integration of services across communities and sectors for people living with traumatic brain injury (TBI) to meet their complex needs. Building on insights gained from earlier pilot work, here we report the outcomes of a participatory workshop that sought to better understand the challenges, barriers and opportunities that currently exist within the care pathway for survivors of TBI.


| INTRODUCTION
Severe traumatic brain injury (TBI) has a profound impact on people, their carers and families, especially evident when transitioning from hospital to home and the community. 1 Care is experienced as fragmented, and there is an urgent need for better integration across health and social care and the voluntary sector to enable people with TBI to be at the heart of care. 2 TBI is a major challenge both globally 3 and for the UK healthcare system. 4 As a major cause of long-term disability, TBI can affect all areas of daily life, reducing the quality of life significantly for both the person and their carers. [1][2][3] The transition from hospital to home and the community across patient pathways tests the principles of integrated health and social care systems to its limits, 2 and so getting it right for this group of citizens would provide key lessons for all.
Whilst this challenge affects all societies internationally, 3  Founded on insights about how the care pathway is experienced 2 and using the key principles associated with co-production 5 and practice development (PD), 6 this service development initiative describes and outlines a specific process that has been used to begin to develop more integrated person-centred, safe and effective care and services across the health and social care system. Working in partnership with people who have experienced TBI, their families, carers predominantly through key charities, and other stakeholders, the global approach of 'what matters to you' 7 underpins the purpose and direction of the transformation required.

| The local context
An epidemiological report 8 published by Kent and Medway Observatory identified that the incidence of TBI has increased for two successive years (2017-2019), 8 with the total number of in-patient hospital admissions for TBI increasing from 3645 (2016/17) to 4295 (2018/19). There is no available comparative hospital admission data for this period nationally. The latest regional data for the South East of England for 2019-2020 shows that the rate of finished admission episodes for head injuries has increased by 12% since 2005-2006. 9 These rates of TBI in Kent and Medway are consistent with European rates. Other key findings from the Observatory report can be found in Box 1.

BOX 1.
Findings from the Kent and Medway Observatory report 8 TBI represents approximately 1% of all admissions (elective and emergency) to hospitals in Kent and Medway.
A higher level of deprivation appears as a risk factor for TBI in Kent and Medway, both in terms of incidence (by initial admission) and for subsequent readmission. all of which have regularly come together to exchange best practices at annual brain injury conferences organized and chaired by the Service Director of the Neuro-rehabilitation Unit. Key themes emerging from these meetings catalysed an initial research study 2 to gain insight into the experiences of people diagnosed with severe TBI, who were being discharged home from the local in-patient service. Insights were also gained from their carers during the first-month post-discharge. This study concluded that patients and carers struggled to say what meaningful support had been given for transition into community living. It reported that, following discharge, there were new unanticipated needs that remained unresolved. This study also confirmed that patients and carers require further support in the longer term after the first month postdischarge in the transitional period.
In light of these postdischarge difficulties and the increasing incidence of TBI in Kent and Medway, the Neuro-rehabilitation Service Director in East Kent decided to convene a consultation with service providers and users at a stakeholder event in the House of Commons in October 2018. 11 The overarching aims of the event were to (1) raise awareness of the needs of TBI survivors and of the importance of specialist rehabilitation and care services, (2)

| Methodology
The interactive workshop adopted a 'practice development' methodology, which is detailed in Figure 2.
PD is a useful tool for formulating new innovations and services and is conducted 'with' rather than 'on' people. In this instance, PD was used to co-create the purpose, direction, activities and outcomes to inform how TBI services across this ICS should be formulated. PD was selected to guide the initiative because of (1) Its underpinning values-the provision of seamless, person-centred, safe and effective care across communities with continuity, enabling everyone (providers and recipients of care/services) to thrive and flourish; and (2) Ways of working that are collaborative, inclusive and participative to co-create outputs with stakeholders and service users enabling active engagement and ownership drawing on the expertise and experiences of all.
PD has much in common with the concept of 'co-production'.
While there is no single agreed consensual definition of co-production in the literature, Langley et al. 12 suggest that 'co-production' can be seen as a way of working with people as 'knowledge users' 12 (p. 112) while Kothari et al. 13 define co-production as 'a model of collaborative research that explicitly responds to knowledge user needs in order to produce research findings that are useful, useable and used' (p. 1). In 2018, the NIHR published guidance on how to co-produce a research project 14 which identified key principles and features, whilst acknowledging that there is no 'one size fits all approach' (p. 5). The five key principles identified relate to power sharing, inclusivity of perspectives, relationship building, respecting and valuing all participant contributions and gaining benefits from working together. These principles were all integral to the way that the workshop was conducted on the day and served to enhance the PD methodology used.

| METHOD
A wide range of diverse stakeholders was invited to take part in a 3-h workshop. These were all connected to the East Kent Neurorehabilitation Service, and also included representation from key partner agencies and charities across the acute and rehabilitation care  Table 1).
The event was intentionally organized on a central hospital site to enable those hospital clinicians to participate who had been unable to leave the hospital to attend the initial launch event in London. The PD processes used in the workshop are summarized in Table 2. PD blends creativity with learning, freeing people's heart, minds and souls, to achieve new ways of thinking, doing and being.  The themes generated collectively were then allocated to an implementation and impact framework by participants (Process 5). This framework comprised three parts-the enablers required to support system transformation and improved services for people with TBI; the activities or attributes that would characterize what the system and the pathway would be doing when caring for people in Kent and Medway with TBI, and lastly, the anticipated impact that would guide the evaluation of the system's effectiveness. Figure 3 describes the analysis process to explain how the results were generated.

Processes
Process 6 involved a creative exercise to help participants to think 'outside the box' and to envisage a new future for the service, which could be developed in future sessions.
The final workforce process (P7) focused on creative evaluation, an important part of PD to capture both collaborative learning and how the workshop was experienced in relation to the collaborative, inclusive and participative space intended.

| RESULTS
The interactive processes between individuals and groups within this workshop, which can be described as co-production (Langley et al. 12 ), enabled participants to identify and share core priorities and enabled the development of an implementation and impact framework to guide integrated services for people with TBI at two levels: (1) at the micro level-which refers to the frontline teams interfacing directly with people living with TBI across the care pathway; (2) at the macro level, which identifies what the ICS needs to do to support an improved care pathway.
The key values and priorities that were identified included: (1) Restoring the quality of life after brain injury with stories that tell this; (2) Involving families to ensure support is provided for all; (3) Collective objective-setting; (4) Integrated services across all parts of the pathway; (5) Funding to achieve values and meet demand.
The shared purpose that emerged from the four mixed working groups to guide the transformation of services (see Box 2) was: To enable people to optimise their rehabilitation potential and return to a meaningful life, maximising their quality, participation and independence Two interrelated implementation and impact frameworks were developed from themes generated at the workshop for the purpose of identifying the enablers, activities and indicators for evaluating impact with a specific focus on (1) individuals with TBI and their direct care teams, (2) the broader ICS that supports the TBI pathway.
The implementation and impact framework summarized in Table 3 focuses on what participants feel is needed by people with TBI, their carers and families at the micro-system level and across the T A B L E 1 Stakeholder representation from across Kent and Medway in the workshop. Each group developed a statement of ultimate purpose and agreed four ways of achieving the purpose (stems 1-2) which were shared with other groups and collated electronically to inform purpose (1st level analysis) (1) I/We believe the ultimate purpose of services for people with TBI needing rehabilitation is. (2) I/We believe this purpose can be achieved by the following four bullet points. Participant Groups decided where their themes tentatively sit on the implementation and impact framework (2nd level analysis), that is: Themes from collaborative analysis in groups are placed on the implementation and impact framework (1) An enabler (2) An attribute of the system/service

Pre-DraŌ ImplementaƟon and Impact framework
Third level analysis by facilitator, verified by project team. IntegraƟng all datasets into final draŌ framework ImplementaƟon and Impact framework and audit trail sent out for verificaƟon by parƟcipants and wider system-wide community DraŌ ImplementaƟon and Impact framework F I G U R E 3 Data analysis flow chart leading to the synthesis of the implementation and impact framework from workshop processes (P).

BOX 2:
Synthesizing the ultimate purpose for care for people with traumatic brain injury from the four workshops group purposes Synthesized shared purpose Groups 1-4 agreed ultimate purposes × 4 Ultimate purpose is: To enable people to optimize their rehab potential and return to a meaningful life, maximizing their quality, participation and independence To enable people to achieve their optimal rehab potential and long-term quality of life To maximize access and opportunity to enable the patient to achieve optimum function and participation and support families and wider services in this journey Key activities that the ICS needs to embrace include: creating social engagement opportunities for professional stakeholders; promoting active participation in 'learning for all' events; championing and celebrating continuous improvement and innovation and using population data for planning. The outcomes and impact are those most relevant to people with TBI and their families, however, staff outcomes, such as well-being and job satisfaction, were also recognized as influential on the quality of care experienced.

| Evaluation of the workshops
Evaluation is vital not just to ascertain whether outcomes were achieved and how they inform continuous learning and improvement, but also to establish whether collaboration, inclusion and participation produced a genuine co-productive experience. 6 In keeping with the principles of PD to use inclusive evaluation approaches that endorse co-production that focus on what matters to people, PD also blends creativity with learning to free peoples' hearts, minds and souls to achieve new ways of thinking, doing and being (see Figure 2). Participants on their tables were encouraged to capture words that best described their experience T A B L E 3 An implementation and impact framework for people following traumatic brain injury at the microsystems level and the teams providing direct care. System enablers-see systems framework (see Table 4)

| DISCUSSION
The shared direction and purpose co-created from the workshop were to find better ways to 'optimise rehabilitation potential and return to a meaningful life, maximizing their quality, participation and independence'.
Developing a shared purpose is the starting point when embarking on a journey of collaborative transformation, major change and sustainable improvement, 16  T A B L E 4 A system-wide implementation and impact framework for supporting people and workforce teams caring for people following traumatic brain injury across place.

Enablers Activities/attributes Outcomes/impact
Systems leadership that drives integration (1) Effective leadership that integrates team experts with 'joined-up' working across the whole pathway and patient journey, for example, specialist services input to include neuropsychiatry and neurobehavioral/neuropsychological expertise (2) Multidisciplinary interagency and interprofessional working, sharing and supporting across all health and social care sectors Workforce development and resources (1) Workforce development through a multiprofessional career and capability framework (2) Resources: people with skills, time, equipment, facilities, for example, day hospital; (3) Funding to pursue innovation and technology A learning culture that supports education and research (1) A forum for learning that is resourced (2) Education opportunities for all: individuals, partners and agencies in care (3) A diverse research programme, comprising multiple groups and integrated into the pathway to improve both short and long-term patient and family outcome. These groups will also be able to make an educational contribution Stakeholder commissioning for a joined-up pathway with: (1) Equity of access to services (2) Integrated communication system (3) Infrastructure for population health management (data) Funding (1) Opportunities for establishing long-term funding across sectors and expansion of the service county-wide Creating engagement opportunities for people with emphasis on care in the community Enabling active participation in education and learning by staff, patients and the wider community Championing and celebrating people, continuous improvement and innovations, for example, improving options for appropriate supportive living in the community Using population health data for planning Broader engagement with society Outcome measures of performance, quality and clinical outcomes (1) Impact indicators for person, families and team (see Table 3) System process indicators (1) Reduced length of stay (2) Reduced admissions (3) Re-admission rates (4) Reduced waiting list to access services/clinics (5) Reduced referrals to mental health, criminal justice, alcohol and drug abuse (6) Early intervention (7) Increased synergy across health and social care (8) Removal of systems barriers Learning culture (1) Lifelong learning for people and staff Population (1) BAME population integration and pathway monitoring Society impact (1) Involvement of Brain Injury volunteer organizations (2) Normalizing, campaigning, legislation BOX 3: An example of first-level data analysis from group written post-it notes to generate a theme title for one enabler at the systems level There is a need for improved continuity of care across pathways with flexible follow-up and access to support contacts, and better communication. 1,2 Case managers would be pivotal to enable continuity and improvement of care by ensuring that the patient and carer are at the centre of service provision. 2 Support with meeting the complex care needs of people with TBI is required not just for carers and families, but also by general practice, and community care partners involved in care management across the system. 2 The UK Brain Injury charity, Headway, defines a case manager as being 'responsible for overseeing and managing the overall care of the person with a brain injury. They will prepare an individually tailored care plan or treatment programme for and with each client, which is designed to meet the person's specific health, social and emotional needs'. 23 Whilst Headway recognizes that case managers come from different professional backgrounds, they assert that in the United The professional skills training required to help teams and systems take forward any insights gained from these data are also often missing, as are the governance systems that integrate learning with improvement and research at the meso and macro system levels. 22 There is a large range of standardized outcome measure Together with the framework articulated in Tables 3 and 4, these core principles highlight action priorities at the care interface that: (1) Use and embed emotional touchpoints 17 with other measures that support learning, enable improvement and celebration, as well as identify the strategies that work, using co-production approaches; (2) Consider how people living with TBI and their families can be potentially supported to contribute to improving the care pathway for people post-TBI in the community; Embedding what matters at the microsystem level through using tools derived from experience-based design, such as emotional touchpoints, provides deep emotional insights when used in everyday practice. 17 Emotional support has been identified as a key unmet need for both people with TBI and their carers 2 and this tool can be tailored to people following TBI, their carers and families to explore both positive and negative emotions associated with unmet needs across pathways as well as successes. 17  This area of action should endeavour to: (1) Appoint systems leaders with the prerequisite skill set to ensure a joined-up approach across ICS and TBI pathways; (2) Develop a multiprofessional capabilities and career framework (including case management) around each individual's TBI journey; (3) Create further opportunities for genuine engagement approaches with people and communities through co-production; (4) Enable the co-evaluation of person-centred, safe and effective resources and services by creating a learning culture across the system at every level, inclusive of all.
System levers and enablers required to support pathways for people with TBI include systems leadership 28 31 This kind of approach would place the ability to collaborate and share best practices at the heart of staff recruitment and development. Developing the right staff capabilities for a quality integrated service where learning is at the heart of the system is a priority.
Developing people-centred learning cultures at every level of the system is another essential enabler 30

| Strengths and limitations
We acknowledge that the implementation of the current framework and sustenance of allied values will depend on multiple factors. The NHS is a complex system within which numerous teams, services and individuals are working under constantly changing conditions, organizational climates and political influences. Together these affect the extent to which a front-line team can work in partnership with people post-TBI. The COVID-19 pandemic has changed work environments and practises and has especially affected the NHS work environment. We are also conscious that individuals who have survived TBI are a vulnerable group who may well have been impacted more negatively during the pandemic and lockdown periods. It is fortuitous that this workshop event took place prepandemic, which enabled a large group of stakeholders to take part without any undesirable health risks. We do note, however, that the workshop would perhaps have been enhanced by even greater citizen involvement. To reiterate a key point from above, we also understand that one learning outcome from the pandemic has been that there is a need to work in much greater partnership with people across the system and build collaborative working relationships. The introduction of ICSs across England provides a template through which to achieve this.

| CONCLUSION
The recommendations made here formulated through a process of co-production, provide an initial framework by which the experiences of people living with TBI can be improved via system-wide transformation. Co-produced improvements are needed postdischarge at both the micro-level across pathways (to improve the experience and contribution of people with TBI at the care interface) and systems-level (to improve staff culture, recruitment and progression and increase multidisciplinary expertise that is joinedup). More broadly, the co-produced framework model that has emerged could offer a template for other neurological rehabilitation services that are likewise in need of reform.