CREATING A SWEDISH INFRASTRUCTURE FOR REGISTER-BASED RESEARCH REGISTERFORSKNING.SE & REGISTER UTILISER TOOL (RUT) Karl Gertow & Magnus Eriksson Unit for Register-Based Research Swedish Research Council Open national SIMSAM meeting October 13th 2016, Norrköping
Government commission Infrastructures for register-based research The Government Research and Innovation Bill 2012: The Swedish Research Council should improve access to and facilitate the use of register data for research purposes Background: “Register data for research” (SOU 2012:36)
Infrastructures for register-based research Main approaches I) Provision of information, advisory and education functions for register-based research - registerforskning.se and Register Utiliser Tool (RUT) II) Improved access to register data for research purposes via coordination and cooperation with register owners Advise and anchoring via the Register Data Board
Considering the challenges to meet • Can register data be used to answer the research question? • What data exist? In which registers? • What is the meaning of the register variables, and has this changed over time? • Is the meaning the same in different registers? • What code lists or value ranges are used and have they changed over time? • Can data in different registers be linked? • How do I request data? • Do I need any particular permissions? • What legislation is applicable? • Et cetera
Registerforskning.se A web portal for register-based research • Information and support throughout the register research process • Information on how data may be accessed and on applicable legislation • Information on registers at Swedish authorities, health care registers (quality registers) and biobanks that may be of interest for research • News • The domain Registerforskning.se was kindly transferred from SIMSAM-INFRA
Launched February 2016
Support to researchers
Support to researchers
Registers and biobanks
General info and legal matters
Future development • English version • Outlook and updates
Calls – presentera ngt om detta? Other VR activities related to register-based research • VR call on national infrastructure for databases in social sciences and medicine with focus on individual-level data (spring 2017) • Nordic Programme on Health and Welfare (NordForsk, VR co-funds) - Nordic register-based research projects (deadline passed) • Other initiatives depending on the Research and Innovation Bill 2016
Find the data – RUT
Register Utiliser Tool - RUT A web-based tool to explore register metadata The tool displays register structure and contents as well as the meaning and representation of variables
RUT in the research process Reducing time-to-data RUT may reduce: - time spent to grasp the meaning and representation of the variables - time spent to communicate with the register owners before disclosure Formulate Application Evaluate Publish & & & & Define Disclosure Update Finish Formulate Study design Identify Data Application Application Disclosure Research Ethics Data & Question Review Disclosure Linkage
REQUIREMENTS
High-level Functional Requirements Support the reseacher in selecting a study population. Provide functions for variable search that do not require knowledge of register owners, registers or variable names and a way to search by meaning/concepts Provide metadata to support the researcher during evaluation of a variable in relation to the research question. Support the researcher during harmonization efforts by providing the metadata needed during harmonization analysis. Give the researcher access to metadata on variable meaning, representation and populations in order to support communication of design in a clear and distinct way. Provide support during analysis of a variables quality & sources, collection methods etc.
Search - Through Concepts/ConceptSystems Evaluation Definition: Evaluation of surgical procedure Patient reported outcome Handfunction Definition: A patient-reported outcome or PRO is a Definition: method or questionnaire used in a clinical Measures regarding range-of-motion, power, trial or a clinical setting, where the responses feel collected by medical personel. are collected directly from the patient. PREM Definition: Patient Reported Experience Measures. Measures regarding the patients experience of the treatment and care.
…to variables Patient reported outcome PREM Definition: A patient-reported outcome or PRO is a Definition: Patient Reported Experience Measures. Measures method or questionnaire used in a clinical trial or a clinical setting, where the responses regarding the patients experience of the are collected directly from the patient. treatment and care. Experience of treatment in clinic Function Household Duties Definition: Definition: Patient Reported Experience Measures. Measures Ability to perform heavy household duties such regarding the patients experience of the treatment as laundry, washing floors, cleaning windows and care. VAS_10 QDASH_fr2
Harmonization Efforts - Display differences & Similarities
Harmonization Efforts – Perspectives on Differences & Similarities
Harmonization Efforts – Perspectives on Differences & Similarities
APPLICATION
Search
Search
Presenting variables
Presenting concept systems
Analyze selection detail Expand for more information! Explore the variables use within populations
Evaluating & selection variables (Adding representation & time)
Register Utiliser Tool - RUT Current status and future development • Prototype version contains three registers: two registers from Statistics Sweden and a health care quality register • Release with quality-assured metadata from the current registers by the end of the year • Development of RUT – MANagement, an interface for management of metadata in RUT by the register owners • Continous inclusion of new registers and biobanks
registerforskning@vr.se karl.gertow@vr.se magnus.eriksson@vr.se
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