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Linking Swedish health data registers to establish a research database and a shared decision-making tool in hip replacement

Cnudde, Peter; Rolfson, Ola; Nemes, Szilard; Kärrholm, Johan; Rehnberg, Clas; Rogmark, Cecilia LU ; Timperley, John and Garellick, Göran (2016) In BMC Musculoskeletal Disorders 17(1).
Abstract

Background: Sweden offers a unique opportunity to researchers to construct comprehensive databases that encompass a wide variety of healthcare related data. Statistics Sweden and the National Board of Health and Welfare collect individual level data for all Swedish residents that ranges from medical diagnoses to socioeconomic information. In addition to the information collected by governmental agencies the medical profession has initiated nationwide Quality Registers that collect data on specific diagnoses and interventions. The Quality Registers analyze activity within healthcare institutions, with the aims of improving clinical care and fostering clinical research. Main body: The Swedish Hip Arthroplasty Register (SHAR) has been... (More)

Background: Sweden offers a unique opportunity to researchers to construct comprehensive databases that encompass a wide variety of healthcare related data. Statistics Sweden and the National Board of Health and Welfare collect individual level data for all Swedish residents that ranges from medical diagnoses to socioeconomic information. In addition to the information collected by governmental agencies the medical profession has initiated nationwide Quality Registers that collect data on specific diagnoses and interventions. The Quality Registers analyze activity within healthcare institutions, with the aims of improving clinical care and fostering clinical research. Main body: The Swedish Hip Arthroplasty Register (SHAR) has been collecting data since 1979. Joint replacement in general and hip replacement in particular is considered a success story with low mortality and complication rate. It is credited to the pioneering work of the SHAR that the revision rate following hip replacement surgery in Sweden is amongst the lowest in the world. This has been accomplished by the diligent follow-up of patients with feedback of outcomes to the providers of the healthcare along with post market surveillance of individual implant performance. During its existence SHAR has experienced a constant organic growth. One major development was the introduction of the Patient Reported Outcome Measures program, giving a voice to the patients in healthcare performance evaluation. The next aim for SHAR is to integrate patients' wishes and expectations with the surgeons' expertise in the form of a Shared Decision-Making (SDM) instrument. The first step in building such an instrument is to assemble the necessary data. This involves linking the SHARs database with the two aforementioned governmental agencies. The linkage is done by the 10-digit personal identity number assigned at birth (or immigration) for every Swedish resident. The anonymized data is stored on encrypted serves and can only be accessed after double identification. Conclusion: This data will serve as starting point for several research projects and clinical improvement work.

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author
organization
publishing date
type
Contribution to journal
publication status
published
subject
keywords
Comorbidities, Database, PROM, Revision, Shared Decision Model, Socio-economic, Total Hip Arthroplasty
in
BMC Musculoskeletal Disorders
volume
17
issue
1
pages
10 pages
publisher
BioMed Central
external identifiers
  • scopus:84990818601
  • wos:000395029400002
ISSN
1471-2474
DOI
10.1186/s12891-016-1262-x
language
English
LU publication?
yes
id
ebc41cb9-b39f-4f9b-8814-ee7dfbfb7af2
date added to LUP
2016-11-16 09:04:00
date last changed
2017-10-01 05:25:55
@article{ebc41cb9-b39f-4f9b-8814-ee7dfbfb7af2,
  abstract     = {<p>Background: Sweden offers a unique opportunity to researchers to construct comprehensive databases that encompass a wide variety of healthcare related data. Statistics Sweden and the National Board of Health and Welfare collect individual level data for all Swedish residents that ranges from medical diagnoses to socioeconomic information. In addition to the information collected by governmental agencies the medical profession has initiated nationwide Quality Registers that collect data on specific diagnoses and interventions. The Quality Registers analyze activity within healthcare institutions, with the aims of improving clinical care and fostering clinical research. Main body: The Swedish Hip Arthroplasty Register (SHAR) has been collecting data since 1979. Joint replacement in general and hip replacement in particular is considered a success story with low mortality and complication rate. It is credited to the pioneering work of the SHAR that the revision rate following hip replacement surgery in Sweden is amongst the lowest in the world. This has been accomplished by the diligent follow-up of patients with feedback of outcomes to the providers of the healthcare along with post market surveillance of individual implant performance. During its existence SHAR has experienced a constant organic growth. One major development was the introduction of the Patient Reported Outcome Measures program, giving a voice to the patients in healthcare performance evaluation. The next aim for SHAR is to integrate patients' wishes and expectations with the surgeons' expertise in the form of a Shared Decision-Making (SDM) instrument. The first step in building such an instrument is to assemble the necessary data. This involves linking the SHARs database with the two aforementioned governmental agencies. The linkage is done by the 10-digit personal identity number assigned at birth (or immigration) for every Swedish resident. The anonymized data is stored on encrypted serves and can only be accessed after double identification. Conclusion: This data will serve as starting point for several research projects and clinical improvement work.</p>},
  author       = {Cnudde, Peter and Rolfson, Ola and Nemes, Szilard and Kärrholm, Johan and Rehnberg, Clas and Rogmark, Cecilia and Timperley, John and Garellick, Göran},
  issn         = {1471-2474},
  keyword      = {Comorbidities,Database,PROM,Revision,Shared Decision Model,Socio-economic,Total Hip Arthroplasty},
  language     = {eng},
  month        = {10},
  number       = {1},
  pages        = {10},
  publisher    = {BioMed Central},
  series       = {BMC Musculoskeletal Disorders},
  title        = {Linking Swedish health data registers to establish a research database and a shared decision-making tool in hip replacement},
  url          = {http://dx.doi.org/10.1186/s12891-016-1262-x},
  volume       = {17},
  year         = {2016},
}