NIHR Journals Library, Health Services and Delivery Research, 23(7), p. 1-160, 2019
DOI: 10.3310/hsdr07230
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BackgroundPatient 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 aimTo 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.DesignA 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 outcomesA 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.LimitationsSmall 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.ConclusionsUsing 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 workFurther exploration is needed of implementation into practice, transferable uses and technology development co-design approaches.FundingThe National Institute for Health Research Health Services and Delivery Research programme.