Are data from national quality registries used in quality improvement at Swedish hospital clinics?

Fredriksson, Mio; Halford, Christina; Eldh, Ann Catrine; Dahlström, Tobias; Vengberg, Sofie; Wallin, Lars; Winblad, Ulrika

doi:10.1093/intqhc/mzx132

Cited by 12 publications

(19 citation statements)

References 18 publications

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“…This study showed that the type of registry and its potential use may be connected to what kind of data is registered, the specific condition or type of care process followed, whether it is acute/short or chronic/life-long intervention, and if the registry focuses on diagnosis or on risk assessments and prevention. This has also been observed by Fredriksson et al [ 14 ] studying the usefulness of using data from the NQRs for QI. These observations should guide further studies on strategies to promote the use of NQRs.…”

Section: Discussionsupporting

confidence: 68%

“…It has since then been followed by an increasing number of registries, today more than 100, focusing on specific disorders or healthcare processes [ 8 ]. Three certification levels were introduced in 2012 to assess the maturity and quality of a registry based on a set of indicators [ 14 ]. The certification process is led by an executive committee appointed by the Swedish Association of Local Authorities and Regions (SALAR).…”

Section: Methodsmentioning

confidence: 99%

“…The Swedish NQRs have also long been seen as a “largely untapped resource” [ 4 ], especially when it comes to using the registries for research but also for quality improvement (QI) [ 11 , 13 , 14 ]. In recent years, patient involvement and self-reported experience have been recognised as a gap in quality registries.…”

Section: Introductionmentioning

confidence: 99%

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

Sparring

Granström

Sachs

et al. 2018

BMC Health Serv Res

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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.

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Section: Discussionsupporting

confidence: 68%

Section: Methodsmentioning

confidence: 99%

See 1 more Smart Citation

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

Sparring

Granström

Sachs

et al. 2018

BMC Health Serv Res

View full text Add to dashboard Cite

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“…The incidence of lung cancer registered in the Swedish National Quality Registry for Lung Cancer (NLCR) is around 3000 patients a year, compared to 13.000 patients newly diagnosed lung cancer patients in the Netherlands. Patient coverage in the NLCR was 94 % in 2014, which is comparable with the DLCA-L [24]. As to our knowledge, outcomes of lung cancer quality indicators from the NLCR are not reported.…”

Section: Comparison With Other Auditsmentioning

confidence: 54%

“…This linkage could also be possible for the DLCA-L, using the questionnaires chosen by the International Consortium for Healthcare Outcomes Measurement (ICHOM) [29]. Individual participating hospitals are already using PROMs in daily clinical care, but these data are not yet linked to the clinical data from the DLCA-L. Other lung cancer registries, such as the Danish and Swedish, have included PROMs to measure the quality of life [3,24].…”

Section: Future Perspectivesmentioning

confidence: 99%

The Dutch Lung Cancer Audit: Nationwide quality of care evaluation of lung cancer patients

et al. 2020

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This study describes the initiation of the Dutch Lung Cancer Audit for Lung Oncology (DLCA-L) and reports the first results of three years of clinical auditing. Methods: The initiation, dataset, and data quality of the DLCA-L are described. For the analyses, all patients registered from 2017 to 2019 were included. Descriptive statistics were used to assess the first outcomes of the DLCA-L, including results from quality indicators, patient-and tumor characteristics, and the real-world use of immunotherapy. Results: The DLCA-L was initiated after the surgery and radiotherapy audit for lung cancer. In total, 33.788 NSCLC patients and 4.293 SCLC patients were registered in the DLCA-L from 2017 to 2019. Seventy-three (97 %) Dutch hospitals participated in the DLCA-L in 2019. The registry became nationwide in 2020. The data quality improved over the years, with complete cases in 90 % of the NSCLC patients. In total, 15 quality indicators were established based on DLCA-L data to improve processes and clinical outcomes. An example of these quality indicators was brain imaging at diagnosis of stage III NSCLC patients, which increased from 80 % in 2017 to 90 % in 2019 and hospital variation was reduced. The DLCA-L provided data on immunotherapy use in stage IV NSCLC (n = 4.415) patients. These patients had a median age of 67 years and 11 % of the patients had an ECOG PS ≥ 2. The number of patients treated with immunotherapy in different hospitals varied between 2 patients to 163 patients per hospital. Conclusion: The DLCA-L has become a valuable and complete data source with national coverage in 2020. A high number of registered patients and limited missing data resulted in better insights into hospital processes and outcomes of lung cancer care. Quality indicators were, with success, used to establish improvements and minimize hospital variation. The DLCA-L also provides hospitals real-world information on the use of (systemic) therapies.

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LSE–Lancet Commission on the future of the NHS: re-laying the foundations for an equitable and efficient health and care service after COVID-19

et al. 2021

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The UK's response to the pandemicThe UK has recorded one of the highest death rates associated with COVID-19 globally, whether measured as deaths that are directly attributable to COVID-19 or by excess mortality. The reasons for this high rate are complex and not yet fully understood, but elements of the UK Government response have been criticised, including delayed implementation of physical distancing measures, poor coordination with local authorities and public health teams, a dysfunctional track and trace system, and an absence of consultation with devolved nations. The role of the National Health Service (NHS) and relevant national executive agencies in relation to testing capacity, availability of personal protective equipment (PPE), the cancellation and postponement of many aspects of routine care, and decisions around discharge from hospital to care homes should also be critically examined. Conversely, aspects of the response by the NHS and relevant national executive agencies deserve recognition. In only a few weeks, capacity for critical care was mas sively expanded, many thousands of staff were reallocated, and services were reorganised to reduce transmission of SARS-CoV-2. The NHS also collaborated with academic institutions to share knowledge about clinical characteristics of the disease and to establish world-leading clinical trials on vaccines and treatments.The response to COVID-19 brings to attention some of the chronic weaknesses and strengths of the UK's health and care systems and real challenges in society to health. Failures in leadership, an absence of trans parency, poor integration between the NHS and social care, chronic underfunding of social care, a fragmented and disempowered public health service, ongoing staffing shortfalls, and challenges in getting data to flow in real time were all important barriers to coordinating a comprehensive and effective response to the pan demic. More positively, the high amount of financial protection that was provided by the NHS and an allocation of resources that explicitly accounted for differing geographical needs have, to some extent, mitigated the already substantial effect of the pandemic on health inequalities. The London School of Economics and Political Science-Lancet Commission on the future of the NHSThis UK-wide London School of Economics and Political Science (LSE)-Lancet Commission on the future of the NHS provides the first analysis of the initial phases of the COVID-19 response as part of a uniquely comprehensive assessment of the fundamental strengths of and chal lenges that are faced by the NHS. The NHS has long been regarded as one of the UK's greatest achievements, providing free care at the point of delivery for over 66 million people from birth to death.Against this backdrop, and considering international evidence, this Commission sets out a long-term vision for the NHS: working together for a publicly funded, integrated, and innovative service that improves health and reduces inequalities for all. This Commission makes seven reco...

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Are data from national quality registries used in quality improvement at Swedish hospital clinics?

Cited by 12 publications

References 18 publications

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

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

The Dutch Lung Cancer Audit: Nationwide quality of care evaluation of lung cancer patients

LSE–Lancet Commission on the future of the NHS: re-laying the foundations for an equitable and efficient health and care service after COVID-19

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