Review of 103 <scp>S</scp>wedish <scp>H</scp>ealthcare <scp>Q</scp>uality <scp>R</scp>egistries

Emilsson, Louise; Lindahl, Bertil; Köster, Max; Lambe, Mats; Ludvigsson, Jonas F.

doi:10.1111/joim.12303

Cited by 291 publications

(287 citation statements)

References 70 publications

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“…hospital admission and discharge dates, diagnoses and procedures [11], Cause of death register [12], Medical birth register [13], Cancer register [14]). Data retrieved from Statistics Sweden administering civic information including, for example migration [15] and socio-economic characteristics [16], healthcare quality registers focusing on certain conditions or procedures [17] or regional databases with detailed administrative information on healthcare consumption [18] were registered as coming from these sources. As medical records include extensive health information, linkage to this data source was recorded separately [19].…”

Section: Methodsmentioning

confidence: 99%

The First Decade with the Swedish Prescribed Drug Register – A Systematic Review of the Output in the Scientific Literature

Wallerstedt

Wettermark

Hoffmann

2016

Basic Clin Pharma Tox

163

150

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The aim of this study was to quantify and characterize the scientific output from the Swedish Prescribed Drug Register (SPDR) the first decade after its establishment. A systematic literature search was performed in Medline, EMBASE and PubMed (2005-2014). Additional publications were identified by personal knowledge, reference lists, contact with active authors and a citation search in Web of Sciences. Publications using SPDR data were included in the analysis and characterized regarding study type, presence of patient-level record linkage, target population and topic. A total of 719 publications were identified in the literature search and an additional 148 by other strategies. Three hundred and thirty-eight studies fulfilled the inclusion criteria. The majority were analytic (n = 166; 49.1%) or descriptive (n = 100; 29.5%). The remaining studies focused on validation (n = 20; 5.9%), health economics (n = 16; 4.7%) or miscellaneous (n = 36; 10.7%). The analytic studies investigating effects of drug exposure focused mainly on safety (n = 46) and/or effectiveness (n = 24). The first publications appeared in 2007 (n = 6), and in 2014, 90 articles using SPDR were published. Over the years, linkage with other registers using the personal identity number increased (0-88.9% of the publications). The population was often selected by age (49.7%), condition (45.0%) and/or drug (22.8%) and concerned predominantly psychiatric (29.0%) and cardiovascular (20.4%) diseases. In conclusion, this study illustrates that the establishment of a nationwide individual-based register on dispensed prescription drugs facilitates an encouraging development of pharmacoepidemiological research, both regarding the number of publications and the scientific level of the analyses.Increased availability of register data on drug treatment has contributed to the rapid developments within pharmacoepidemiology [1][2][3]. In the Nordic prescription databases, established 1993 to 2006, detailed and comprehensive nationwide information on dispensed drugs, patient and prescriber is available [4]. In Sweden, the Swedish Prescribed Drug Register (SPDR) was expanded to include the identity of the patient on 1 July 2005 [5]. Thus, since then and for research purposes after ethics application [6], the unique personal identity number given to all Swedish citizens has allowed linkage between drug dispensing data and other registers [7].The Swedish Prescribed Drug Register now contains one decade of patient-level data on all dispensed prescription drugs in Sweden. The first 10 calender years of SPDR include purchases of 891 million prescriptions and 44,829 million defined daily doses [8]. Each year, drug purchases by more than 6 million inhabitants are registered in SPDR [8], representing about two-thirds of the Swedish population.As the establishment of an individual-based register on dispensed prescription drugs can be questioned on the basis of integrity issues, it is important to balance these risks with potential benefits, for example the contri...

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Section: Methodsmentioning

confidence: 99%

The First Decade with the Swedish Prescribed Drug Register – A Systematic Review of the Output in the Scientific Literature

Wallerstedt

Wettermark

Hoffmann

2016

Basic Clin Pharma Tox

163

150

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“…The collection of clinical data in U-CAN is complementary to the mandatory reporting to the Swedish Cancer Registry and the respective Swedish quality registries for each cancer diagnosis [7]. The quality registries constitute a national resource not only for the evaluation of the quality of care but also for clinical and epidemiological research.…”

Section: Patient Datamentioning

confidence: 99%

U-CAN: a prospective longitudinal collection of biomaterials and clinical information from adult cancer patients in Sweden

et al. 2017

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Background: Progress in cancer biomarker discovery is dependent on access to high-quality biological materials and high-resolution clinical data from the same cases. To overcome current limitations, a systematic prospective longitudinal sampling of multidisciplinary clinical data, blood and tissue from cancer patients was therefore initiated in 2010 by Uppsala and Umeå Universities and involving their corresponding University Hospitals, which are referral centers for one third of the Swedish population. Material and Methods: Patients with cancer of selected types who are treated at one of the participating hospitals are eligible for inclusion. The healthcare-integrated sampling scheme encompasses clinical data, questionnaires, blood, fresh frozen and formalin-fixed paraffin-embedded tissue specimens, diagnostic slides and radiology bioimaging data. Results: In this ongoing effort, 12,265 patients with brain tumors, breast cancers, colorectal cancers, gynecological cancers, hematological malignancies, lung cancers, neuroendocrine tumors or prostate cancers have been included until the end of 2016. From the 6914 patients included during the first five years, 98% were sampled for blood at diagnosis, 83% had paraffin-embedded and 58% had fresh frozen tissues collected. For Uppsala County, 55% of all cancer patients were included in the cohort. Conclusions: Close collaboration between participating hospitals and universities enabled prospective, longitudinal biobanking of blood and tissues and collection of multidisciplinary clinical data from cancer patients in the U-CAN cohort. Here, we summarize the first five years of operations, present U-CAN as a highly valuable cohort that will contribute to enhanced cancer research and describe the procedures to access samples and data.ARTICLE HISTORY

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“…A large proportion of RWD is underutilized due to the quality of data, limited skills to evaluate fragmented data with sophisticated methodology. Assessment of 103 Swedish healthcare quality registries demonstrated difficulties related to generalizability about their quality [3]. Explanations included: completeness, variations in coverage and validity, and information on timeliness.…”

Section: Why Rwe Now?mentioning

confidence: 99%

“…Thus, RWE is an old wine in a new bottle. RWD characterized as patient registries have been a long tradition in the Nordic countries due to publicly financed healthcare and a unique person identifier, which enables linkage of data from different registries [3]. However, the impact of RWD/ RWE on health technology assessment (HTA) decision-making process regarding new treatments is not well assessed and the explanatory factors are not well known.…”

mentioning

confidence: 99%

Deriving more value from RWE to ensure timely access of medicines by patients

Wamala-Andersson

Kyhlstedt²

2017

J. Comp. Eff. Res.

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Keywords: comparative effectiveness research • evidence-based medicine • health technology assessmentReal world evidence (RWE) is defined as a form of evidence generated to answer a question or test a hypothesis using real world data (RWD) and using appropriate design and statistical analyses [1]. Others define RWE as the intersection between the randomized controlled trials (RCTs) and effectiveness of treatment in usual clinical practice [2]. To those with public health expertise, RWE is not totally a new phenomenon. Population-based studies using RWD are often conducted to evaluate the effectiveness and value of health programs and policies. Thus, RWE is an old wine in a new bottle. RWD characterized as patient registries have been a long tradition in the Nordic countries due to publicly financed healthcare and a unique person identifier, which enables linkage of data from different registries [3]. However, the impact of RWD/ RWE on health technology assessment (HTA) decision-making process regarding new treatments is not well assessed and the explanatory factors are not well known. Why RWE now?RWE has recently gained attention from patients, providers, payers, regulators and pharma industry. People are living longer in almost every part of the world with increasing demand for a healthy living. Technological advancement enables quick flow of data and information, thus increasing level of knowledge on health and on what works and what does not [4]. Patients have high expectations on health systems to offer safe and effective treatments.Parallel to this, global public health trends show increasing burden of noncommunicable diseases due to unhealthy lifestyle [5], implying a large proportion of people living a long unhealthy life about 30-40 years.Healthcare costs are rising at a much faster rate than gross domestic product (GDP), creating budget deficiencies [5]. This reinforces payers to ensure that they put money in treatments that are cost effective, add value to patients and improve population health.Thus, regulatory agencies begin to realize the benefit of RWE for regulatory decisionmaking for medicines and medical devices.Thus, in order for the industry to sell their products, they need RWE studies to address effectiveness, efficiency, value and safety of their products. Some companies have developed strategies to generate RWE, others are using ad hoc solutions, while the rest are waiting for the RWE wave to pass. Developing a new treatment is costly, yet a large proportion will never make it to the market. RWE is a potential cost-saver in various phases of the drug development lifecycle [6].RCTs are regarded as the gold standard for providing the scientific evidence of clinical Editorial Andersson & Kyhlstedt efficacy of treatments. However, evidence from the RCTs does not address real life conditions due to strict selection criteria with a limited study population, questionable external validity and generalizability [7]. RWE studies, on the other hand, demonstrate effectiveness in real world clinical pra...

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Review of 103 Swedish Healthcare Quality Registries

Abstract: Abstract. Emilsson L, Lindahl B, K€ oster M, Lambe M, Ludvigsson JF (V ardcentralen V€ armlands Nys€ ater,

Cited by 291 publications

References 70 publications

The First Decade with the Swedish Prescribed Drug Register – A Systematic Review of the Output in the Scientific Literature

The First Decade with the Swedish Prescribed Drug Register – A Systematic Review of the Output in the Scientific Literature

U-CAN: a prospective longitudinal collection of biomaterials and clinical information from adult cancer patients in Sweden

Deriving more value from RWE to ensure timely access of medicines by patients

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