One size fits none – a qualitative study investigating nine national quality registries’ conditions for use in quality improvement, research and interaction with patients

Abstract

BackgroundSwedish National Quality Registries (NQRs) are observational clinical registries that have long been seen as an underused resource for research and quality improvement (QI) in health care. In recent years, NQRs have also been recognised as an area where patients can be involved, contributing with self-reported experiences and estimations of health effects. This study aimed to investigate what the registry management perceived as barriers and facilitators for the use of NQRs in QI, research, and interaction with patients, and main activities undertaken to enhance their use for these purposes. The aim was further to identify potential differences between various types of NQRs for their use in these areas.MethodsIn this multiple case study, nine NQRs were purposively selected. Interviews (n = 18) were conducted and analysed iteratively using conventional and directed content analysis.ResultsA recent national investment initiative enabled more intensive work with development areas previously identified by the NQR management teams. The recent focus on value-based health care and other contemporary national healthcare investments aiming at QI and public benchmarking were perceived as facilitating factors. Having to perform double registrations due to shortcomings in digital systems was perceived as a barrier, as was the lack of authority on behalf of the registry management to request participation in NQRs and QI activities based on registry outcomes. The registry management teams used three strategies to enhance the use of NQRs: ensuring registering of correct and complete data, ensuring updated and understandable information available for patients, clinicians, researchers and others stakeholders, and intensifying cooperation with them. Varied characteristics of the NQRs influenced their use, and the possibility to reach various end-users was connected to the focus area and context of the NQRs.ConclusionsThe recent national investment initiative contributed to already ongoing work to strengthen the use of NQRs. To further increase the use, the demands of stakeholders and end-users must be in focus, but also an understanding of the NQRs’ various characteristics and challenges. The end-users may have in common a need for training in the methodology of registry based research and benchmarking, and how to be more patient-centred.

The role of professional logics in quality register use: a realist evaluation

“…Therefore, development of healthcare systems would benefit from finding ways how to identify and place hybrid professionals in leading positions. Another study supports the idea to emphasize the demands from local stakeholders and the specific end-users to increase to use of NQRs in clinical practice [25]. The study used empirical data from 9 different NQRs with a wide variety of indicators such as intervention indicators, diagnosis indicators, prevention indicators, palliative and psychiatry indicators.…”

Collection and use of EQ-5D for follow-up, decision-making, and quality improvement in health care - the case of the Swedish National Quality Registries

“…More generally, low interpretability of output data (e.g. by patients and care givers), as well as survey fatigue, have been identified as barriers to the use of clinical registry data in quality improvement, research, and interactions with patients [22]. Altogether, these findings highlight the importance of not only focusing on the data collection when exploring the implementation of PROMs in routine health care, but also the need to study the actual use of PROMs, and their implications in terms of improvement of patient care and/or health outcomes.…”

Working with national quality registries in older people care: A qualitative study of perceived impact on assistant nurses’ work situation

“…The consequences of working with the NQRs on the work situation are an important issue, especially in care of older people. Previous research on NQRs in health care has mainly focused on the effects of medical and care interventions in a disease area and/or on the care process and more recently on conditions for their use (Eldh et al., 2005; Granström, Hansson, Sparring, Brommels, & Nyström, 2018; Sparring, Granström, Andreen Sachs, Brommels, & Nyström, 2018). How staff's work situation is affected by work with NQRs has been less studied and no such study has focused specifically on care of older people.…”