NCBI Bookshelf. A service of the National Library of Medicine, National Institutes of Health.
Headline
Multidisciplinary mixed stakeholder co-design showed proof of concept for automated display of patient experience free-text comments in a way that could drive health-care improvements in real time.
Abstract
Background:
Patient experience surveys (PESs) often include informative free-text comments, but with no way of systematically, efficiently and usefully analysing and reporting these. The National Cancer Patient Experience Survey (CPES), used to model the approach reported here, generates > 70,000 free-text comments annually.
Main aim:
To improve the use and usefulness of PES free-text comments in driving health service changes that improve the patient experience.
Secondary aims:
(1) To structure CPES free-text comments using rule-based information retrieval (IR) (‘text engineering’), drawing on health-care domain-specific gazetteers of terms, with in-built transferability to other surveys and conditions; (2) to display the results usefully for health-care professionals, in a digital toolkit dashboard display that drills down to the original free text; (3) to explore the usefulness of interdisciplinary mixed stakeholder co-design and consensus-forming approaches in technology development, ensuring that outputs have meaning for all; and (4) to explore the usefulness of Normalisation Process Theory (NPT) in structuring outputs for implementation and sustainability.
Design:
A scoping review, rapid review and surveys with stakeholders in health care (patients, carers, health-care providers, commissioners, policy-makers and charities) explored clinical dashboard design/patient experience themes. The findings informed the rules for the draft rule-based IR [developed using half of the 2013 Wales CPES (WCPES) data set] and prototype toolkit dashboards summarising PES data. These were refined following mixed stakeholder, concept-mapping workshops and interviews, which were structured to enable consensus-forming ‘co-design’ work. IR validation used the second half of the WCPES, with comparison against its manual analysis; transferability was tested using further health-care data sets. A discrete choice experiment (DCE) explored which toolkit features were preferred by health-care professionals, with a simple cost–benefit analysis. Structured walk-throughs with NHS managers in Wessex, London and Leeds explored usability and general implementation into practice.
Key outcomes:
A taxonomy of ranked PES themes, a checklist of key features recommended for digital clinical toolkits, rule-based IR validation and transferability scores, usability, and goal-oriented, cost–benefit and marketability results. The secondary outputs were a survey, scoping and rapid review findings, and concordance and discordance between stakeholders and methods.
Results:
(1) The surveys, rapid review and workshops showed that stakeholders differed in their understandings of the patient experience and priorities for change, but that they reached consensus on a shortlist of 19 themes; six were considered to be core; (2) the scoping review and one survey explored the clinical toolkit design, emphasising that such toolkits should be quick and easy to use, and embedded in workflows; the workshop discussions, the DCE and the walk-throughs confirmed this and foregrounded other features to form the toolkit design checklist; and (3) the rule-based IR, developed using noun and verb phrases and lookup gazetteers, was 86% accurate on the WCPES, but needs modification to improve this and to be accurate with other data sets. The DCE and the walk-through suggest that the toolkit would be well accepted, with a favourable cost–benefit ratio, if implemented into practice with appropriate infrastructure support.
Limitations:
Small participant numbers and sampling bias across component studies. The scoping review studies mostly used top-down approaches and focused on professional dashboards. The rapid review of themes had limited scope, with no second reviewer. The IR needs further refinement, especially for transferability. New governance restrictions further limit immediate use.
Conclusions:
Using a multidisciplinary, mixed stakeholder, use of co-design, proof of concept was shown for an automated display of patient experience free-text comments in a way that could drive health-care improvements in real time. The approach is easily modified for transferable application.
Future work:
Further exploration is needed of implementation into practice, transferable uses and technology development co-design approaches.
Funding:
The National Institute for Health Research Health Services and Delivery Research programme.
Contents
- Plain English summary
- Scientific summary
- Chapter 1. Background and introduction
- Patient experience surveys
- Patient experience survey free-text comments
- Current limitations in the usefulness of free-text comments
- Alternative approaches to the analysis of free-text comments
- Information retrieval
- Engagement with the data: making it meaningful for all
- Aims and objectives
- Overview of the study
- Chapter 2. Scoping review of clinical digital toolkit design
- Chapter 3. Scoping studies
- Chapter 4. Information extraction (rule-based information retrieval)
- Introduction
- Challenges in analysing survey free-text comments and key foci
- Data used to develop and test the approach
- The main task: coping with the syntactic irregularities and terse style
- Output granularity
- Additional issues realised during the study and their possible solutions
- Further possible refinements
- Transferability to other surveys and data sets
- General maintenance needs
- Implications for research and health care
- Summary
- Chapter 5. Dashboard development
- Chapter 6. Group concept-mapping workshops and interviews
- Chapter 7. Elicitation of individual preferences
- Chapter 8. Evaluation of the rule-based information retrieval
- Chapter 9. Evaluation of the toolkit
- Chapter 10. Patient and public involvement
- Introduction
- Type of involvement
- Summary of involvement opportunities
- Who was involved?
- Setting up the group and first meeting
- Launch, infographic, newsletters, blogs and social media use
- Impact of patient and public involvement
- Issues and challenges, with Patient and Public Involvement Research Group feedback and research team reflection
- Discussion
- Chapter 11. Overall discussion of findings and outputs and their strengths and limitations
- Acknowledgements
- References
- Appendix 1. Search terms for the review reported in Chapter 2 and the rapid review reported in Chapter 3
- Appendix 2. Preferred Reporting Items for Systematic Reviews and Meta-Analyses 2009 flow diagram, scoping review for PRESENT (clinical digital toolkit design)
- Appendix 3. Summary of the key features that health-care dashboards and toolkits should incorporate according to the literature only (see Chapter 2)
- Appendix 4. Preferred Reporting Items for Systematic Reviews and Meta-Analyses 2009 flow diagram, rapid review for PRESENT (themes)
- Appendix 5. Feedback from stakeholders on an early iteration of the dashboard and subsequent action taken
- Appendix 6. Concept-mapping workshop participants
- Appendix 7. Summary of key findings concerning candidate design changes (opportunities and challenges) and the resultant refinements from stage 3
- Glossary
- List of abbreviations
About the Series
Article history
The research reported in this issue of the journal was funded by the HS&DR programme or one of its preceding programmes as project number 14/156/15. The contractual start date was in November 2015. The final report began editorial review in July 2017 and was accepted for publication in December 2017. The authors have been wholly responsible for all data collection, analysis and interpretation, and for writing up their work. The HS&DR editors and production house have tried to ensure the accuracy of the authors’ report and would like to thank the reviewers for their constructive comments on the final report document. However, they do not accept liability for damages or losses arising from material published in this report.
Declared competing interests of authors
none
Last reviewed: July 2017; Accepted: December 2017.
- NLM CatalogRelated NLM Catalog Entries
- Review Current experience and future potential of facilitating access to digital NHS primary care services in England: the Di-Facto mixed-methods study.[Health Soc Care Deliv Res. 2024]Review Current experience and future potential of facilitating access to digital NHS primary care services in England: the Di-Facto mixed-methods study.Abel G, Atherton H, Sussex J, Akter N, Aminu AQ, Bak W, Bryce C, Clark CE, Cockcroft E, Evans H, et al. Health Soc Care Deliv Res. 2024 Sep; 12(32):1-197.
- Folic acid supplementation and malaria susceptibility and severity among people taking antifolate antimalarial drugs in endemic areas.[Cochrane Database Syst Rev. 2022]Folic acid supplementation and malaria susceptibility and severity among people taking antifolate antimalarial drugs in endemic areas.Crider K, Williams J, Qi YP, Gutman J, Yeung L, Mai C, Finkelstain J, Mehta S, Pons-Duran C, Menéndez C, et al. Cochrane Database Syst Rev. 2022 Feb 1; 2(2022). Epub 2022 Feb 1.
- Intersecting factors of disadvantage and discrimination and their effect on daily life during the coronavirus pandemic: the CICADA-ME mixed-methods study.[Health Soc Care Deliv Res. 2025]Intersecting factors of disadvantage and discrimination and their effect on daily life during the coronavirus pandemic: the CICADA-ME mixed-methods study.Rivas C, Moore AP, Thomson A, Anand K, Lal ZZ, Wu AF, Aksoy O. Health Soc Care Deliv Res. 2025 Feb; 13(2):1-185.
- Improving support and planning ahead for older people with learning disabilities and family carers: a mixed-methods study.[Health Soc Care Deliv Res. 2024]Improving support and planning ahead for older people with learning disabilities and family carers: a mixed-methods study.Ryan S, Wallace L, Tilley E, Tuffrey-Wijne I, Mikulak M, Anderson R, Vaid A, Bebbington P, Keagan-Bull R, Morrissey E, et al. Health Soc Care Deliv Res. 2024 Jun; 12(16):1-161.
- Dashboards in Health Care Settings: Protocol for a Scoping Review.[JMIR Res Protoc. 2022]Dashboards in Health Care Settings: Protocol for a Scoping Review.Helminski D, Kurlander JE, Renji AD, Sussman JB, Pfeiffer PN, Conte ML, Gadabu OJ, Kokaly AN, Goldberg R, Ranusch A, et al. JMIR Res Protoc. 2022 Mar 2; 11(3):e34894. Epub 2022 Mar 2.
- Automated analysis of free-text comments and dashboard representations in patien...Automated analysis of free-text comments and dashboard representations in patient experience surveys: a multimethod co-design study
Your browsing activity is empty.
Activity recording is turned off.
See more...