CREATING A SWEDISH INFRASTRUCTURE FOR REGISTER-BASED RESEARCH - - PowerPoint PPT Presentation

CREATING A SWEDISH INFRASTRUCTURE FOR REGISTER-BASED RESEARCH

Karl Gertow & Magnus Eriksson Unit for Register-Based Research Swedish Research Council Open national SIMSAM meeting October 13th 2016, Norrköping

REGISTERFORSKNING.SE & REGISTER UTILISER TOOL (RUT)

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)

Government commission

Infrastructures for register-based research

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

Infrastructures for register-based research

Main approaches

• 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

Considering the challenges to meet

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

The tool displays register structure and contents as well as the meaning and representation of variables

Register Utiliser Tool - RUT

A web-based tool to explore register metadata

RUT may reduce:

• time spent to grasp the meaning and representation of the variables
• time spent to communicate with the register owners before disclosure

RUT in the research process Reducing time-to-data

Formulate & Define Application & Disclosure Evaluate & Update Publish & Finish

Formulate Research Question Study design Identify Data Application Ethics Review Application Data Disclosure 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

• wners, 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. 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. Support the researcher during harmonization efforts by providing the metadata needed during harmonization analysis. Provide support during analysis of a variables quality & sources, collection methods etc.

Handfunction

Definition: Measures regarding range-of-motion, power, feel collected by medical personel.

PREM

Definition: Patient Reported Experience Measures. Measures regarding the patients experience of the treatment and care.

Patient reported outcome

Definition: A patient-reported outcome or PRO is a method or questionnaire used in a clinical trial or a clinical setting, where the responses are collected directly from the patient.

Evaluation

Definition: Evaluation of surgical procedure

Search

• Through Concepts/ConceptSystems

…to variables

VAS_10 QDASH_fr2

Function Household Duties

Definition:

Ability to perform heavy household duties such as laundry, washing floors, cleaning windows

Experience of treatment in clinic

Definition:

Patient Reported Experience Measures. Measures regarding the patients experience of the treatment and care.

Patient reported outcome

Definition: A patient-reported outcome or PRO is a method or questionnaire used in a clinical trial or a clinical setting, where the responses are collected directly from the patient.

PREM

Definition: Patient Reported Experience Measures. Measures regarding the patients experience of the treatment and care.

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)

• 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

Register Utiliser Tool - RUT

Current status and future development

registerforskning@vr.se karl.gertow@vr.se magnus.eriksson@vr.se