Title: Enhancing the credibility, usefulness and relevance of patient experience data in services for people with long-term physical and mental health conditions using digital data capture and improved analysis of narrative data (DEPEND)
Funder: Department of Health and Social Care

Abstract: Background & relevance to NHS: Collecting patient experience data is mandatory to ensure high quality services responsive to needs. Data often come from retrospective, generic surveys, of questionable relevance to specific services. Many organisations collect free text feedback, and there is increasing interest in the use of digital data capture and patient narratives. 1 Collect timely, relevant data for specific areas of service provision that meets requirements of staff to inform service improvement; 2 Analyse narrative data that is already collected but not analysed routinely and systematically; 3 Support staff with resources for improving the usefulness of multiple forms of data; 4 Use data to stimulate service improvement. Research question: Can the credibility, usefulness and relevance of patient experience data in services for people with long-term conditions be enhanced using digital data capture (quantitative & qualitative) and improved analysis of narrative data? Aims & methods: 1 Collection & Usefulness—Improve data collection and usefulness by helping people provide timely, personalised feedback on the experience of services and by understanding needs of staff for effective presentation and use of data. Qualitative research will explore perspectives of patients and carers on providing patient experience data, and in the use of such data by clinical teams and managers. 2. Analysis & presentation—Improve the processing and analysis of narrative data alongside multiple sources of qualitative data. Computer science text analytics methods (Spasic et al, 2014) will be used to develop routine, semi-automated analysis of narrative data; providing a resource for data that is currently collected but not analysed systematically. We will also explore ways of presenting analysed patient experience data alongside measures of quality, safety and outcomes. 3 Co-design of toolkit—Improve resources for enhancing collection, analysis and presentation of patient experience data for staff teams in order to maximise the potential for stimulating service improvement. An Experience-Based Design approach (EBD; Bate & Robert, 2007), will draw on the initial qualitative research, the computer science work and insights from our PPI group, to co-design ways to enable and support digital data capture, analysis and use of quantitative and narrative data. These methods will be used to formulate a toolkit comprising: guidance about collecting patient feedback; new methods for analysing patient feedback data; new methods and guidance for presenting patient feedback data. 4. Implement & evaluate—We will implement a toolkit and conduct a process evaluation (Moore, 2015) to explore the implementation, potential mechanisms of effect, and the impact of context, drawing on normalisation process theory (May & Finch, 2009) and “absorptive capacity” (Cohen & Levinthal, 1990). We will analyse time spent collecting and analysing data to estimate costs. Care pathways: The project will focus on services for two exemplar long-term conditions: serious mental illness (SMI) and musculoskeletal conditions (MSK), where there are high levels of service use, co-comorbidity, and concerns regarding continuity or safety of care. Setting: 3 research sites: 1 Rheumatology outpatient department in Salford Royal Foundation Trust (SRFT); 2 A community mental health team in Manchester Mental Health and Social Care Trust (MMHSCT); 3 Two general practices within Salford CCG.

Lay abstract: Background: Information about the experience of patients when they use NHS services is already collected using patient surveys. Staff often think these surveys are not useful, as people have to remember what they thought about a service they used in the past. Collecting feedback using mobile phones or tablets straight after a service is used may be better. Patients often write detailed comments about their experiences on surveys, but these are often not used as staff cannot read through them all. Some services record patient stories to help staff improve services. However, there has been little research on the best ways to collect, analyse, and use these sorts of data to best improve the NHS. The study asks: can we make data about patient experience of NHS services easier to collect, and more useful, by improving the way we analyse and present this data? There are 4 parts to our study. 1 Can we improve collection of data to help people provide timely, personalised feedback on NHS services in ways that are useful to staff? We will talk to patients to find out their views on collection of data on patient experience. Working with patients, we will design new and effective ways to collect data on patient experience, through writing, audio or video. We will talk to health staff and their managers about how they would want this data presented so they can best use it. 2 Can we improve the analysis of patient comments and stories (so called ‘narrative data’)? We will use computer science methods (known as ‘text-mining’) to analyse patient comments and stories quickly and effectively. We will see how patient comments and stories relate to other measures the NHS collects on quality, safety and outcomes. 3 Can we design a toolkit that helps NHS staff collect, analyse and use data on patient experience? Working alongside patients and staff, we will bring data together from our earlier work to help us design training, guidance and computer tools to help patients and staff collect data, analyse it, and use it in ways that are useful and make a difference to NHS services. 4 Does the introduction of the toolkit into the NHS improve collection, analysis and presentation of data on patient experience? We will get services to use the toolkit, and talk to patients and staff to see if the toolkit has made a difference in the way that data on patient experience is collected, analysed, and used to improve NHS services for patients. We will see how much time and effort staff have to put in to use the toolkit, which will help us understand the costs and benefits involved. The project will focus on two groups of patients: those with serious mental illness (such as schizophrenia), and those with musculoskeletal conditions (such as arthritis). These groups are similar in some ways: they use lots of different NHS services, face difficulties in seeing the same staff at different appointments, and can be at risk of harm when services do not work well. However, these patients groups also differ in their age and the types of problems that they face. By looking at both groups, we will be better able to understand how to improve patient experience in specific groups of patients, and also how to make the results relevant to other patient groups across the NHS. We will conduct the research in 3 sites: a rheumatology outpatient department in Salford, a community mental health team in Manchester, and two general practices in the North West.

Research activity codes: 8.1 ORGANISATION AND DELIVERY OF SERVICES
Health categories: MENTAL HEALTH;MUSCULOSKELETAL