Patients and staff as codesigners of healthcare servicesGlenn 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

Plain English summaryPatient or user involvement in health research is well-established but is often limited to advising on research questions and design, leaving researchers to collect and analyse ‘data’ (which in this paper means written copies of interviews with patients about their experiences). We were working with sets of interviews with 1) young people with depression and 2) people with experiences of stroke. We were looking for key themes that it would be useful for the NHS to know about, and we developed short films which healthcare staff can use to think about how to make care more patient-centred. We wanted to see what user involvement in this analysis would bring, and how best to achieve it practically.After the researcher team had analysed the interviews, we ran two one-day workshops with people with relevant experience as a patient/service user or carer. We gave them some brief training in how to analyse interviews and how they might be used for improving the quality of care. Then we looked at extracts from the interviews, and discussed whether people could see the same themes as the researcher.People identified similar themes to the researcher, but also identified new details the researcher had missed. However, they felt reading large amounts of text was not the best way to use their time and experience. Instead they recommended that a better approach would be for a researcher to meet with a group of users at the start of analysis, to discuss what to look out for.Abstract Background Patient or user involvement in health research is a well-established principle. However, involvement is often limited to advising on research questions and design, leaving researchers to complete data collection and analysis. Involvement in data analysis is one of the most challenging, least well-explored aspects of involvement. Qualitative interview data forms high volumes of rich, complex material which can be daunting to work with.Analysing narrative interviews with patients is central to a patient-centred quality improvement method called experience-based co-design. The analysis identifies ‘touchpoints’ – key moments of healthcare experiences – and leads to the production of a ‘trigger film’ to spark codesign discussions between patients and staff. We wanted to see what user involvement in this analysis would bring, and how best to achieve it. Methods As part of a wider secondary analysis study to create new trigger films, we re-analysed interview transcripts on experiences of young people with depression and experiences of stroke. We then ran two workshops with people with relevant lived experience, working with extracts from the same materials after brief training. Results People involved in the workshops identified similar themes to the researcher, but also brought some new insights. While they engaged easily with the materials selected, we under-estimated how much time it would take people to work through these. Discussion and sharing experiences and perspectives were highly valued in the first workshop. In the s...

Purpose – The potential for including patients in implementation processes has received limited attention in the literature. The purpose of this paper is to explore the different roles adopted by 63 patients that emerged during and after four participatory quality improvement interventions, and the nature of their impact upon implementation processes and outcomes. Design/methodology/approach – A cross-case ethnographic comparison of Experience-based Co-design in two clinical pathways in two UK NHS Trusts. Findings – Two key themes emerge from the data. First, the authors found a range of different roles adopted by patients within and across the four projects; some were happy to share their experiences, others also helped to identify improvement priorities alongside staff whilst others were also involved in developing potential solutions with the staff who had cared for them. A few participants also helped implement those solutions and became “experts by experience” through engaging in the whole co-design process. Second, in terms of the impact of patient engagement with the co-design process whilst the changes championed by patients and carers were often small scale, as co-designers patients provided innovative ideas and solutions. Through their involvement and contributions they also acted as catalysts for broader change in the attitudes of staff by providing a motivation for wider organisational and attitudinal changes. Research limitations/implications – The research was conducted in two clinical pathways in two NHS trusts. However, the findings complement and add to the growing body of knowledge on experience based co-design. Practical implications – Patient engagement is likely to require support and facilitation to ensure that patients can play a meaningful role as partners and co-designers in service improvement and implementation. Different roles suited particular individuals, with participants stepping in and out of the co-design process at various stages as suited their needs, capacities and (albeit sometimes perceptions re) skills. In this context, facilitation needs to be sensitive to individual needs and flexible to support involvement. Social implications – Patients and carers can play active roles in service improvement, particularly where the approach facilitate active engagement as co-designers. Originality/value – Analysis of the role patients and carers in implementation and improvement.

To provide nurses with an evidence‐based Position Statement on the standards patients and visitors should expect when visiting an adult critical care unit in the 21st century in the UK. The British Association of Critical Care Nurses (BACCN) is a leading organization for critical care nursing in the UK and regularly receives enquiries about best practice regarding visiting policies. Therefore, in keeping with the BACCN's commitment to provide evidence‐based guidance for nurses, a Position Statement on visiting practices in adult critical care units was commissioned. This brought together experts from the field of critical care nursing and representatives from patient and relatives' groups to review visiting practices and the literature and produce a Position Statement. An extensive search of the literature was undertaken using the following databases: Blackwell Synergy, CINAHL, Medline, Swetswise, Cochrane Data Base of Systematic Reviews, National Electronic Library for Health, Institute for Healthcare Improvement and Google Scholar. After obtaining selected articles, the references from these articles were then evaluated for their relevance to this Position Statement and were retrieved. The evidence suggests a disparity between what nurses believe is best practice and what patients and visitors actually want. Historically, visitors have been perceived as being responsible for increasing noise, taking up space, taking up nursing time, hindering nursing care and spreading infection. The evidence reviewed for this Position Statement suggests there are many benefits to patients and nurses from visitors. There was no evidence to suggest that visitors pose a direct infection risk to patients. Clear visiting policies based on evidence will negate arbitrary decisions by nurses regarding who can visit and will lessen confusion and dispel myths which can only bring benefits to patients, staff and organizations. To make nurses aware of the physical and psychological benefits of visiting to patients. Visitors bring a positive energy to patients and can act as advocates. They can supply nurses with vital information about patients which will enable the nurse to provide more individualized care. Being cognizant of the evidence will help nurses develop policies on visiting which are up to date for the 21st century.

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