Informing the development of NICE (National Institute for Health and Care Excellence) quality standards through secondary analysis of qualitative narrative interviews on patients’ experiences

Background: We set out to explore if, and how, an archive of qualitative, narrative interviews covering over 60 health issues could be used to inform the development of National Institute for Health and Care Excellence (NICE) quality standards. We also sought to identify which aspects of health care are important to people facing different health conditions and to test a set of ‘core components’ in focus groups with people who tend to be less well represented in interview research studies. Objectives: (1) To conduct qualitative secondary analysis (of collections of narrative interviews) to identify common, core components of patients’ experiences of the NHS. (2) To test these candidate components with (i) further purposive sampling of the interview collections and (ii) a series of focus groups with users. (3) To embed the project alongside the development of NICE clinical guidelines and quality standards. (4) To inform the development of measurement tools on patients’ experiences. (5) To develop and share resources and skills for secondary analysis of qualitative health research. Methods and data sources: We used qualitative methods including qualitative secondary analysis, interviews with team members and focus groups. We also ran a workshop on secondary analysis practice and a dissemination seminar. The secondary analysis used narrative interviews from the archive held by the Health Experiences Research Group in Oxford. These interviews have been collected over a 12-year period, number over 3500 and are copyrighted to the University of Oxford for research publications and broadcasting. Other data were digital recordings of interviews and observations at meetings. We prepared reports intended to contribute to NICE clinical guidelines and quality standards development. Results: We identified eight consistently important aspects of care: involving the patient in decisions; a friendly and caring attitude; an understanding of how life is affected; seeing the same health professional; guiding through difficult conversations; taking time to explain; pointing towards further support; and efficiently sharing health information across services. Expectations varied but we found few differences in what is valued, even when we tested the reach of these ideas with groups who rarely take part in mainstream health research. The asthma report for NICE highlighted several issues, but only the importance of proper inhaler training contributed to a quality statement. Several barriers were identified to using (unpublished) tailor-made analyses in NICE product development. Conclusions: We compared the perspectives about what is most valued in health care between people with different health conditions. They were in agreement, even though their experiences of health-care relationships varied enormously. With regard to the NICE clinical guideline and quality standard development process, the usual source of evidence is published qualitative or quantitative research. Unpublished secondary analysis of qualitative data did not fit the usual criteria for evidence. We suggest that targeted secondary analysis of qualitative data has more potential when the qualitative literature is sparse, unclear or contradictory. Further work might include further testing of the identified core components in other patient groups and health conditions, and collaboration with NICE technical teams to establish whether or not it is possible to identify areas of patient experience research where targeted secondary analyses have potential to add to a qualitative literature synthesis. Funding: The National Institute for Health Research Health Services and Delivery Research programme