health registries for research anja ariansen
TRANSCRIPT
Health Registries for
Research (HRR)A national research infrastructure project
funded by The Norwegian Research Council
Anja Ariansen, Phd
General manager
Content
• Definition
• Evaluation of Biology, Medicine and Health Research in Norway (2011)
• Background
• The HRR-project:
a) Collaborating partners
a) Goals
b) Deliverables
• Parallel initiatives
Definition: A health registry is a collection of recordings «where health information
is stored systematically so that information about individuals can be found»
Central health registries:
Several aims: Health surveilance, research, improvement of health services
Nationwide
Mandatory
Covered by strict regulations – passed by the Norwegian parliament
Ofte personally identifiable (personal identity number)
Examples: The Cause of Death registry, The Medical Birth Registry
Evaluation, cont.
Helseregistre for forskning
Why is the infrastructure 'Health
Registries for Research' necessary?
Access to registry data for research is too complex and time-consuming, and researchers
spend their time on obtaining data instead of analysing and publishing
Responsibilities for health registries in Norway are shared among several central
institutions and are distributed regionally. This is unfortunate for health research.
Efficient utilisation of the combined resources for research purposes requires
coordination and networks for cooperation and standardisation
‘Health Registries for Research’ will focus on the scientific use and the needs of
academic users of Norwegian health registries
Granted 36 mill. NOK from The Norwegian Research Council
Project periode: 1.October 2014 - 30.June 2019
Coordinator: University of Bergen
Collaborating partners:
• National Institute of Public Health
• Health Directorate of Norway
• University of Tromsø
• University of Oslo
• NTNU – Norwegian University of Science and Technology
• 4 Regional Health Authorities in Norway (North, Central, West, South-East)
• (NSD – Norwegian Centre of Research Data)
Aim
To establish an internationally competitive research documentation
service based on Norwegian national health registries.
In short: Increased and safer use of health registries in research
Objectives
1) Improved documentation
http://hrr.uit.no/hrrpilot/
2) Improved data security
3) Improved statistical support
HRR - Metadatabase
• Better documentation of the health registries is needed in order to make it
easier to outline a research project, apply for funding, ethical approval and
access to data
• HRR develops metadata – information about data - from central health
registries: For example - Name of the variable (Sex), values (0,1), value labels
(0=Male, 1=Female)
• A collection of metadata from central health registries will be published on the
HRR metadatabase
• Provides an overview of variables available and their characteristics
• HRR develops systems for sending and updating metadata (NIPH, NPR, The
Cancer Registry)
Work packages Responsible
partners
1 Preparing national (central) registry data for research NIPH (Ebbing), UoT
2 Biostatistics support service UoB (Lie), NIPH,
NHH, UoT
3 Data security implementation and support service UoB (Hole)
4 National standard for registry data documentation UoT (Njølstad)
5 Research support for coordination with quality registries for
cardiovascular disease
NTNU/SKDE/HM
(Bønaa)
6 Coordination of utilization of data from the national medical
quality registers for research purposes
SKDE (Magnus)
7 Utilization of national hospital discharge and quality of care
data
NOKC (Helgeland)
8 Data from the Norwegian Patient Register for research NPR (Johansen)
9 Management and coordination UoB/NIP (Lie and
Vollset)
Work packages
Parallel initiatives
1. The government’s «Health data panel» (Helsedatautvalget)
The panel will consider and recommend concrete organizational, technical and juridical means for
improving existing systems for health data while paying particular attention to privacy protection
2. The government’s «Statistical law panel» (Statistikklovutvalget)
The panel will consider if the role of Statistics Norway is suitable in a changing context, and if law
amendments are recommended
3. Riksrevisjonen
Forthcoming report about the use of health registers which aims to consider to what extent data from
health registers are used to improve health policies
4. Agenda Kaupang – Funded by The Norwegian Research Council
Forthcoming report describing obstacles hindering safe and effective use of personal data in health
research in Norway
Thanks for your attention!