CyberHealth - Governance of Health Data in Cyberspace
The University of Iceland School of Social Sciences in cooperation with the School of Humanities present a three year PhD project “Governance of Health Data in Cyberspace”, funded by Nordforsk.
The project leaders in Iceland are Guðbjörg Andrea Jónsdóttir, director of the Social Science Research Institute and Salvör Nordal, former director of the Centre for Ethics at the University of Iceland. The overall research project is led by Jane Kaye, director of HeLEX, Nuffield Department for Population Health, Medical Sciences Division, University of Oxford. Other institutions participating in the project are Centre for Research Ethics and Bioethics, Uppsala University and Department of Private Law, University of Oslo.
The aim of the research project “Governance of Health Data in Cyberspace” is to develop recommendations for resilient governance mechanisms for cyberhealth. In the 21st century, successful healthcare delivery and medical research are increasingly dependent on the collection and distribution of information in cyberspace, with potentially enormous benefits for society; however the risks associated with misuse of data are significant.
The research project will collect case studies from Iceland, Sweden, Norway and the UK where initiatives have raised public outcry because of a failure to fully comprehend social expectations about the use of health data online.
The theory is that when data collected for health reasons is used in other contexts, or data collected for other purposes is used in the context of healthcare, a boundary is breached.
This challenges the contextual integrity of the data (that is, considering the specific values and expectations linked to data collected for a particular reason and how they change if the reason or situation for collecting data changes), and thus may threaten public trust.
This inter-disciplinary project will use a variety of ways to understand the issues of risk and resilience in the governance of health cyberspace in Northern Europe. These will include using focus groups with experts and citizens and a discrete choice experiment in which participants are asked to choose between set responses. From the results of these an understanding of what citizens perceive their risk to be when data is used in health cyberspace will be gained. Using these findings recommendations for governance in cyberspace will be developed, for the benefit of healthcare and other sectors.
Appraisal of projects that received grants in 2010-2012 for services to chronically ill children and children with ADHD
Project managers: Anna Soffía Víkingsdóttir, Auður Magndís Auðardóttir, Ásdís A. Arnalds, Guðbjörg Andrea Jónsdóttir, Hrefna Guðmundsdóttir, Viktor Orri Valgarðsson
Client: Ministry of Welfare
Published: September 5th 2013
Comparison of the wages of men and women teachers at the University of Iceland
Promoters: Kristjana Stella Blöndal, Hildur B. Svavarsdóttir
Client: Teaching University of Iceland
Submitting report: May 2005
The main objective of the research is to investigate whether gender-based wage differences are among the staff of the Iceland University of Education. The analysis is based on wages paid on October 1, 2004.
Comparison of wages of men and women working at Landsvirkjunmanager
The main objective of the research is twofold: on the one hand, to investigate whether gender-based wage differences are among the employees of Landsvirkjun based on wages for January 2006 and, on the other, to check whether gender-based wage differences have changed in relation to the results of a comparable study that based on salary for January 2003.
Comparison of wages of men and women working at Mosfellsbærmanager
Project: Kristjana Stella Blöndal
Submission report: April 2000
The main objective of this study is to analyze the salaries of Mosfellsbær employees.
Evaluation of services provided by The State Diagnostic and Counselling Centre
Project managers: Guðný Bergþóra Tryggvadóttir, Guðbjörg Andrea Jónsdóttir
Evaluation of the Service of the State Diagnostic and Counseling Center
Project Managers: Guðný Bergþóra Tryggvadóttir, Guðbjörg Andrea Jónsdóttir
Client: State Diagnostic and Advisory Center
Submission report: January 2013
To assess the position of parents or custodians for the service of the State Diagnostic and Counseling Center.
Evaluation of the project's success "Think of a child"
Promoters: Ásdís A. Arnalds, Halldór Sig. Guðmundsson, Fridrik H. Jónsson
Submitting report: June 2007
The research center in child and family protection, the Social Science Institute of the University of Iceland and the OB-consultancy co-operated on the preparation of a questionnaire intended to measure the success of the project "Thinking about a child" which started in Iceland in the fall of 2004.
Health and lifestyle
Project managers: Eva Heiða Önnudóttir, Friðrik H. Jónsson, Kristjana Stella Blöndal
Client: Ágústa Pálsdóttir
Published: Longitudinal research
Survey of services after analysis by the Center for Health Protection for Children
Project: Heiður Hrund Jónsdóttir
Client: Children's Health Protection Center
Submission report: November 2005
The aim of the survey was to investigate the consequences and utility of analyzes with regard to the utilization of remedial measures and the status of children several years after they received a team analysis.
Survey on the circumstances of people with arthritis
Project managers: Eva Heiða Önnudóttir, Jóhanna C. Andrésdóttir, Ævar Þórólfsson, Friðrik H. Jónsson
Client: The Icelandic League against Rheumatism
Published: October 2003
Tobacco smoking: Young people in Reykjavík followed from age 14 to 22
Project managers: Sigrún Aðalbjarnardóttir, Andrea G. Dofradóttir
Submission report: 2002
Smoking of the same group of young people in Reykjavik over a seven-year period is reported. The results are part of an extensive long-term study on "Young People's Risk Management". One goal of the study is to investigate how girls and boys tobacco smoking develops and examine the changes in their attitudes to smoking, both after their consumption and age.
See: Adalbjarnardottir, S., & Dofradóttir, A. (2002). Tobacco smoking: Young people in Reykjavík followed from age 14 to 22 [Tobacco smoking: Young people in Reykjavik followed from age 14 to 22]. Reykjavík: Institute of Social Sciences. ISBN 9979-9561-0-0.