Title: Using co-production to improve patient carer and staff experiences in health care organizations: a multi-centre, mixed methods evaluation in inpatient stroke units (CREATE)
Funder: Department of Health and Social Care

Abstract: Stroke is the largest cause of adult disability in the United Kingdom (UK), and accounts for 5% of total NHS costs. Early rehabilitation relevant to patients’ needs can improve independence and the intensity of activity impacts on the degree of recovery, yet national targets to increase therapy intensity and frequency are not being met. In acute stroke units staff, patients and carers can be more involved in increasing supervised and independent therapeutic activity, which has the potential to expedite discharge and decrease dependency on health and social care services in the longer term. National stroke audits have highlighted non-adherence to therapy intensity and frequency recommendations, but cannot help identify solutions. Our research questions focus on the feasibility and impact of patients, carers and clinicians co-producing and implementing interventions to increase supervised and independent therapeutic patient activity in acute stroke units. The research will be undertaken in three phases. In phase 1 we will complete a rapid evidence synthesis to update the evidence on the efficacy and effectiveness of co-production approaches in acute healthcare settings. In phase 2 we will use Experienced Based Co-Design (EBCD) as our co-production approach to design interventions and evaluate the impact in 2 stroke units, in phase 3 we will implement and evaluate the co-produced interventions developed in phase 3 in a further 2 stroke units. To understand factors influencing development, implementation and embedding of interventions, the Normalisation Process Theory (NPT) approach will be utilised A mixed method, case comparison evaluation will be used. We will collect baseline individual patient data on patient reported outcomes of experiences, wellbeing and satisfaction (PROM/PREM) and utilize Stroke Sentinel National Audit Programme data (SSNAP) data to summarise unit performance against national standards. We will record level of stroke severity of patients receiving care in pre and post intervention periods. Non participant observations will be undertaken to examine social, professional and organisational practices and behavioural mapping methods will be used to record type and number of therapeutic activities in each stroke unit in the pre and post intervention periods. In phase 2, using EBCD methods we will conduct interviews with staff, patients and carers, to produce a ‘trigger’ film of their narratives. These data will inform the co-production of interventions by patients, carers and staff to increase supervised and independent therapeutic activity. Post intervention, a review of phase 2 implementation data including observational, behavioural mapping and interview data will inform the decision to proceed to phase 3. We will then implement and evaluate the interventions developed in phase 2 in 2 further stroke units. The same pre and post-test intervention measures will be used to evaluate the impact of implementation. To assess how these teams understood and embedded interventions developed and tested elsewhere, NPT methods will be utlised. Anticipated benefits of the study include establishing whether EBCD can be effectively employed in acute healthcare and identifying interventions to increase therapeutic inpatient activity which can be deployed in all stroke units nationally and potentially in other settings including elderly care and trauma and orthopaedic wards.

Lay abstract: Stroke is a common health problem which often leaves people with disabilities requiring specialist stroke unit care. Patients and carers regard inpatient therapy and rehabilitation as the most important elements of treatment after stroke. However, national recommendations for the amount and frequency of therapy are not currently being met and studies show that inpatients in stroke units spend most of the day inactive. It is essential that stroke services find new ways to provide opportunities to increase supervised and unsupervised patient rehabilitation activity. Patient, carers and other stroke unit staff, not just therapists, could have more active roles in helping patients to participate in and practise rehabilitation activities. Therefore, we propose developing and assessing the impact of a relatively new method of bringing together staff, former patients and carers to review and jointly redesign the way in which rehabilitation-related activity is provided in stroke units in the early days and weeks after stroke. The research would be conducted in 4 stroke units, 2 in London and 2 in Yorkshire. The method, Experienced Based Co-Design (EBCD) is a structured process for co-producing services between staff, patients and carers. It draws expressly on patient experiences and shares these with staff as the basis for service review and redesign. Although not previously tested in early phase stroke care, co-production has resulted in transformation of other healthcare services and we anticipate that this method will transform how inpatient stroke rehabilitation is delivered. We will use EBCD in 2 stroke units, then test the new ways of working produced in 2 additional units to see whether being part of the EBCD process is important in successfully introducing these changes in other stroke units. The new ways of working will be evaluated using patient reported experience and outcome measures. We will also interview staff, patients and carers about their experiences of and views on participating in the EBCD approach. We will observe the practices of staff, and the amount and type of supervised and unsupervised patient rehabilitation activity in the study sites before and after the new ways of working have been implemented. The research team includes an expert in the EBCD model, researchers with professional backgrounds in physiotherapy, nursing, social anthropology and medicine who have led national studies of stroke care. Some team members have lead roles in developing the National Clinical Guidelines for Stroke. The team is supported by an expert advisory group, which includes stroke survivors, clinical staff, service managers and commissioners. The research costs requested support a range of activities essential for successful evaluation of the EBCD model including training staff to use EBCD, staff cover whilst representatives from units participate in co-producing new processes and interventions, and for researchers to undertake data collection and to support all participants throughout the EBCD process and implementing the EBCD derived new ways of working in the additional stroke units.

Research activity codes: 7.1 INDIVIDUAL CARE NEEDS;8.1 ORGANISATION AND DELIVERY OF SERVICES
Health categories: STROKE