Involving service users in the qualitative analysis of patient narratives to support healthcare quality improvement.

PLAIN ENGLISH SUMMARY: Patient 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 second workshop, we therefore started with group discussion, based on people's own experience, of what they thought the touchpoints would be, and later viewed a draft trigger film together to see how it compared. Conclusions Those involved felt that while analysing transcripts was possible in small quantities, it was not best use of their time. We suggest that conversation, rather than data, is at the heart of user involvement in analysis. One way to retain the value of lived experience in the analytic process, without over-burdening people with data, is to elicit user reflections on their experience at the start of analysis, and use this as a guide to direct both researcher and service user attention during the remainder of the process.

Support for compassionate care: Quantitative and qualitative evaluation of Schwartz Center Rounds in an acute general hospital.

OBJECTIVE: To evaluate the impact of Schwartz Center Rounds, a multi-disciplinary forum to reflect on the emotional consequences of working in healthcare, on the staff of a large acute general hospital over a three-year period. DESIGN: Evaluation data following each Round were collected routinely from all staff attending over this period and analysed quantitatively and qualitatively. SETTING: An integrated university teaching trust with both acute hospital and community services in the North East of England. PARTICIPANTS: Over the three-year period of the study, 795 participant evaluation forms were returned by staff attending the Rounds. MAIN OUTCOME MEASURES: A standard evaluation form completed at the end of each Round by those present, including ratings on a five-point scale against each of eight statements and an opportunity to offer additional free text comments. RESULTS: The findings show a very positive response to all aspects of the Rounds by staff who attended. The most highly rated statement was: 'I have gained insight into how others think/feel in caring for patients'. This was reinforced by the qualitative analysis in which the primary theme was found to be Insight. There were no significant differences between disciplines/staff groups, indicating that all staff whether clinical or non-clinical responded to the Rounds equally positively. CONCLUSIONS: Schwartz Rounds are highly valued by staff from all disciplines, and by managers and other non-clinicians as well as clinicians. They appear to have the potential to increase understanding between different staff, and so to reduce isolation and provide support.

Language that Works for Everyone.

Efforts to improve quality in healthcare require concerted action on the part of clinical and non-clinical staff and everyone who works with them. In complex healthcare systems, it is important to frame aspirations and goals in a language that works for everyone. The words that work for everyone to describe what good patient experience is like are: "warm," "welcoming," "listening," "kind" and "friendly." The Change Foundation vision for 2020 is important. Experience in the UK suggests that more emphasis should be placed on relationships and culture as important levers in engagement with patients and quality improvement as well as important barriers to overcome. High-level organizational changes and technical solutions make the process of change sound easier than seems likely, given the height of some of the barriers. Major changes in healthcare, especially where they entail changes in culture, take a long time, not least because of the ordinary problems of management and human relationships. The paper anticipates a longer journey to reach the destination of a truly patient-centred system and full engagement with patients and suggests identifying some staging posts that can be celebrated along the way.

Understanding and improving patient experience: a national survey of training courses provided by higher education providers and healthcare organizations in England.

BACKGROUND: Understanding and improving 'patient experience' is essential to delivering high quality healthcare. However, little is known about the provision of education and training to healthcare staff in this increasingly important area. OBJECTIVES: This study aims to ascertain the extent and nature of such provision in England and to identify how it might be developed in the future. METHODS: An on-line survey was designed to explore training provision relating to patient experiences. To ensure that respondents thought about patient experience in the same way we defined patient experience training as that which aims to teach staff: 'How to measure or monitor the experience, preferences and priorities of patients and use that knowledge to improve their experience'. Survey questions (n=15) were devised to cover nine consistently reported key aspects of patient experience; identified from the research literature and recommendations put forward by professional bodies. The survey was administered to (i) all 180 providers of Higher Education (HE) to student/qualified doctors, nurses and allied health professionals, and (ii) all 390 National Health Service (NHS) trusts in England. In addition, we added a single question to the NHS 2010 Staff Survey (n=306,000) relating to the training staff had received to deliver a good patient experience. RESULTS: Two hundred and sixty-five individuals responded to the on-line survey representing a total of 159 different organizations from the HE and healthcare sectors. Respondents most commonly identified 'relationships' as an 'essential' aspect of patient experience education and training. The biggest perceived gaps in current provision related to the 'physical' and 'measurement' aspects of our conceptualization of patient experience. Of the 148,657 staff who responded to the Staff Survey 41% said they had not received patient experience training and 22% said it was not applicable to them. CONCLUSIONS: While some relevant education courses are in place in England, the results suggest that specific training with regard to the physical needs and comfort of patients, and how patient experiences can be measured and used to improve services, should be introduced. Future developments should also focus, firstly, on involving a wider range of patients in planning and delivering courses and, secondly, evaluating whether courses impact on the attitudes and behaviors of different professional groups and might therefore contribute to improved patient experiences.

What really matters in cancer?: Putting people back into the heart of cancer policy.

Twenty-first century cancer is framed by the biomedical revolution. The cancer patient today enters a world dominated by the success and failures of biomedical science from gene to statistic. By any measure, bibliometric, financial, media profile or simply the lingua franca of everyday discourse about cancer, biomedicine occupies the majority of the cultural discourse around cancer. Yet the reality is that patients are people who are diagnosed, treated, survive and die with cancer in a world bounded by their personal and social experiences. Others they have known with the disease shape their values and concepts. The social determinants of cancer are of far greater importance in terms of prevention, treatment and care than is acknowledged in policy terms. In light of the demographic trend of a rapidly ageing population, increasing costs of healthcare and the urgent need to be able to deliver affordable cancer care set against the population's almost insatiable ability to absorb all types of healthcare, there is an urgent need to redress policy balance in terms of both understanding the social determinants of cancer and bringing new insights into evidence-based national cancer planning and delivery of services.

Intentional rounding: its role in supporting essential care.

The King's Fund Point of Care (POC) programme aims to identify and test interventions that can improve patients' experiences of care. "Intentional rounding" is one such intervention, which is being trialled by some of the teams working with the King's Fund on the POC programme. This article explains the principles of intentional rounding and how nurses can use it to ensure patients' essential care needs are met.