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Title Key Concepts and Principles for Design and Critical Interpretation of Nordic Register-Based Studies
Course number 3199
Programme 0-Not part of doctoral programme
Language English
Credits 3.0
Date 2019-09-23 -- 2020-01-17
Responsible KI department The institute of Environmental Medicine
Specific entry requirements
Purpose of the course Nordic registers constitute individual-level data in registers and databases, so-called microdata, covering vital events, health aspects, demographic and socioeconomic indicators for the entire populations in the Nordic countries over a period of decades. These features make the combination of Nordic register data an indispensable and powerful resource for answering a multitude of research questions, in a time- and cost-effective manner, and can ultimately provide policy-makers and key actors with new knowledge.

The purpose of this two-week course is to provide participants with knowledge on how registers can and should be used for research purposes. This course will cover central concepts and principles for design and critical interpretation of Nordic register-based studies, taking ethical aspects and legal principles into consideration, and be divided into three aligned modules. The third module will be integrated in the two other modules.
Intended learning outcomes At the end, the student should be able to:
Module 1:
- describe theoretical models for causation and discuss the principles of causal mechanisms,
- recognise and formulate well-defined research questions and explain how these are related to the choice of study design,
- explain and contrast central concepts in epidemiological and sociological life-course research,
- explain strengths and weaknesses in common methods and study designs used in register-based research,
- apply knowledge, skills and scientific approach when critically reviewing register-based studies as well as when designing studies in this field.

Module 2:
- reason about how to identify register data to answer the research question under study,
- reflect upon different quality aspects, comparability and discrepancies between data sources when combining register data from different countries,
- identify and explain possible sources and structures of bias,
- evaluate how different sources of bias may influence the findings arising in studies and steps to prevent these,
- apply the knowledge attained to identify and reason about potential biases in own research.

Module 3:
- discuss legal principles and laws that apply to research on personal data,
- reason about legal systems that protect individual privacy with respect to how personal data are used and distributed to others,
- reason about ethical principles that apply, with specific focus on personal privacy, informed consent and the concept of benefit/harm,
- give adequate consideration of ethical aspects and legal principles when handling personal data in relation to own and others´ research projects.
Contents of the course The perspective is Nordic by default, as the course will focus on methodological, practical, ethical and legal aspects of utilising register data from different Nordic countries for research purposes.

Module 1: Central concepts, designs and methods in epidemiological and sociological life-course research. The module focuses on formulation of research questions, central concepts and general principles for study designs and methods commonly used when utilising register data. Designs and methods will be presented in the context of several case studies.

Module 2: Identification of data and analysis of bias in registers. The module focuses on major steps in identifying relevant data from different Nordic countries, and comparability and discrepancies between data sources when combining data. We will cover how to identify and prevent different sources of bias, and aspects that should be kept in mind to gain a deeper understanding of when and how bias can occur, as well as the magnitude and possible direction of bias. Issues related to data quality, such as different variable definitions, data collection methods, reporting procedures, completeness and coverage, and how these aspects can vary, for instance over time and between geographic regions, will be highlighted.

Module 3: Ethical and legal aspects of using personal information in register-based research. The research community is entrusted with their professional responsibility when utilising register data for research purposes. As register data is not primarily collected for research, it is critical to protect and guarantee individual privacy with respect to how personal data are used and distributed to others. This module will be integrated in the above modules and address legal aspects and laws that apply to register-based research, and ethical principles that should be emphasised in this context.
Teaching and learning activities The course will be divided into three aligned modules. The third module will be integrated in the two other modules. The emphasis is on analysis, synthesis and the ability to make critical and independent interpretations, so-called higher order thinking skills. Different strategies, such as interactive lectures and various forms of group assignments will be used. All activities are designed to stimulate active learning, and communication between peers and teachers. Diverse perspectives and a broad, cross-border approach for various problem areas will be promoted, and cross-fertilisation between different disciplines will be stimulated. The collaborative-learning nature of assignments is also highlighted and peer learning emphasised
Compulsory elements
Examination Learning outcomes, teaching and learning activities, and assessment methods will be constructed so that they harmonise, so-called constructive alignment. Assessment and learning are seen as linked and not separate processes. The examination tasks contain formative and summative features. Different methods for feedback on assignments are used, both so-called peer assessment and teacher-to-student. The individual examination (summative assessment) constitutes separate take-home examinations for module 1 and module 2, respectively. Assessment of ILOs for module 3 will be integrated in the assessment for the other two modules. A pass is needed in the three modules in order to pass the course.
Literature and other teaching material Suggested reading:
Rothman KJ. Epidemiology: An Introduction. 2nd ed. Oxford, UK: Oxford University Press; 2012.
Scientific papers and other material will be distributed before the course.
Number of students 12 - 20
Selection of students Eligible doctoral students will be selected based on 1) the relevance of the syllabus for the applicant's doctoral project, and 2) date for registration as doctoral student (priority given to earlier registration date). To be considered, submit a completed application form. Give all information requested, including a description of current research and motivation for attending, and an account of previous courses taken.
More information This two-week course is divided into two separate course weeks. The dates are September 23-27, 2019 (week 1) and January 13-17, 2020 (week 2). The course will be arranged as a retreat somewhere in Sweden. Travel costs and accommodation will be covered in relation to the educational activities.

The target group is doctoral students (and those who have recently completed their doctoral education) involved in register-based research within their research training. Eligible applicants are registered doctoral students at a Nordic higher education institution.

A letter of motivation from the main supervisor is required, which should state that the student is recommended and permitted to take part in the course (with the exceptions of emergencies), (not exceeding one A4 sized page). This letter should be emailed to johanna.bergman@ki.se.
Additional course leader Participating teachers are from different Nordic countries and from different scientific disciplines, and have vast experience of conducting Nordic register-based research and teaching.
Latest course evaluation Not available
Course responsible Anita Berglund
The institute of Environmental Medicine

Anita.Berglund@ki.se
Contact person Johanna Bergman
Institutet för miljömedicin

johanna.bergman@ki.se

Nobels väg 13

17177
Stockholm