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)

Sanders C, Nahar P, Small N, Hodgson D, Ong BN, Dehghan A, Sharp CA, Dixon WG, Lewis S, Kontopantelis E, Daker-White G, Bower P, Davies L, Kayesh H, Spencer R, McAvoy A, Boaden R, Lovell K, Ainsworth J, Nowakowska M, Shepherd A, Cahoon P, Hopkins R, Allen D, Lewis A, Nenadic G
Record ID 32016000609
Authors' objectives: 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.
Project Status: Completed
Year Published: 2020
English language abstract: An English language summary is available
Publication Type: Not Assigned
Country: England
MeSH Terms
  • Chronic Disease
  • Mental Disorders
  • Mental Health
  • Technology
  • Patient-Centered Care
  • Data Collection
  • Telemedicine
Organisation Name: NIHR Health Services and Delivery Research programme
Contact Address: NIHR Journals Library, National Institute for Health Research, Evaluation, Trials and Studies Coordinating Centre, Alpha House, University of Southampton Science Park, Southampton SO16 7NS, UK
Contact Name: journals.library@nihr.ac.uk
Contact Email: journals.library@nihr.ac.uk
Copyright: Queen's Printer and Controller of HMSO
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