Free-text patient experience data inform service development.

Abstract

Understanding patients' experiences of treatment and care is essential to effective service development, and is therefore a common topic of investigation for clinicians and health-service researchers. For service development, different kinds of investigation may be useful for a different purpose. Closed measures of patient satisfaction (e.g. rating scales) are useful in providing reproducible measures in specified domains; however, they are often limited both by the scope of predefined questions and by the level of detail that they provide on processes affecting reported outcomes. Free-text data are therefore often collected alongside such measures, to provide further descriptive detail on patient experience and identify emergent issues that are not covered by closed questions (Bracher et al. BMJ Open 2016;6:e011830). Izzet-Kay et al. present a rigorous and systematic exploration of women's experiences and concerns following mesh-augmented prolapse surgery (BJOG 2021; 128:131–139). The study also provides an exemplar of how free-text analysis can inform service development in more general ways: first, by exploring how patients evaluate treatment success in the context of everyday life; second, by investigating how patients understand costs/risks and benefits of treatment; and third, by identifying issues for further investigation. Findings from the study give us descriptions of experiences as both outcomes (i.e. what happened) and processes (i.e. what factors affected the outcome). This distinction is important, because different types of knowledge can serve distinct but complementary functions in service development: the former identifying areas of concern (e.g. postoperative uncertainty, decision regret), the latter describing mechanisms contributing to the outcome and hence potential points of intervention (e.g. improved information provision, communication and shared decision-making processes) (Elwyn et al. BMJ 2010;341:c5146). Navigating complex healthcare systems (such as treatment pathways involving multidisciplinary teams) involves patients, clinicians and (often) carers in varied kinds of physical, emotional and cognitive work that includes making sense of information, identifying preferences and appraising risk (May et al. BMC Health Serv Res 2014;14(281)). Free-text data can provide important insights into both processes and outcomes that may not be visible through other means such as clinical audit. Findings can be used to complement those from closed measures (as Izzett-Kay et al. have done), inform development of new questions for wider systematic exploration (e.g. through a population-level survey) or identify areas for more detailed qualitative investigation (e.g. through in-depth interviews or longitudinal diaries exploring experiences over time). More detailed qualitative studies may, for example, focus on key points of communication or information provision within treatment pathways, to better understand how presentation and discussion of information affect risk perception and decision-making (Mills et al. J Clin Epidemiol 2011;64:1127–36). Readers of this journal undertaking service evaluation and development activity may wish to consider using free-text data as one additional tool to inform this work, a helpful demonstration of which has been provided by Izzett-Kay et al. None declared. A completed disclosure of interests form is available to view online as supporting information. Please note: The publisher is not responsible for the content or functionality of any supporting information supplied by the authors. Any queries (other than missing content) should be directed to the corresponding author for the article.