The Umeå SIMSAM Lab - Infrastructure for Microdata Research from Childhood into Lifelong Health and Welfare
The purpose of this project is to develop the Umeå SIMSAM Lab infrastructure by creating a new individual-level database that can meet the requirements of research projects investigating some of our current societal challenges.
The infrastructure will prioritize the following research: (I) increase the understanding of how lifelong health and welfare relates to individual traits in combination with intergenerational links; (II) identify and study the inter-relationship between different social domains in which individuals live their daily lives, e.g. family; (III) perform evaluations of reforms and interventions with regard to their costs and consequences in order to bring research results into policy; and (IV) develop novel epidemiological and statistical methods and software to support the above mentioned approaches.
The infrastructure will use national register data in combination with regional data, linked by personal identity number. Individual longitudinal data will be combined with detailed data on families and other social context, providing excellent opportunities for, e.g. life-course-, intergenerational- and multilevel analyses.
Our interdisciplinary group have the knowledge needed to build and maintain such an infrastructure, the methodological skills to undertake required complex analyses, and we have developed routines for sharing with the wider research community at the same time ensuring secure data handling and the integrity of participants.
The infrastructure will prioritize the following research: (I) increase the understanding of how lifelong health and welfare relates to individual traits in combination with intergenerational links; (II) identify and study the inter-relationship between different social domains in which individuals live their daily lives, e.g. family; (III) perform evaluations of reforms and interventions with regard to their costs and consequences in order to bring research results into policy; and (IV) develop novel epidemiological and statistical methods and software to support the above mentioned approaches.
The infrastructure will use national register data in combination with regional data, linked by personal identity number. Individual longitudinal data will be combined with detailed data on families and other social context, providing excellent opportunities for, e.g. life-course-, intergenerational- and multilevel analyses.
Our interdisciplinary group have the knowledge needed to build and maintain such an infrastructure, the methodological skills to undertake required complex analyses, and we have developed routines for sharing with the wider research community at the same time ensuring secure data handling and the integrity of participants.
Final report
Purpose and development
The project aimed to develop a new research infrastructure at Umeå SIMSAM Lab. By compiling individual-level register data from sources that include demographic, socio-economic and health-related factors, the project has produced to a new research infrastructure that makes it possible to study societal challenges regarding childhood and its significance for lifelong health and welfare. Our hope is that this new research infrastructure will be an important resource for many research groups who wish to do research in this area in the coming years. We have high hopes as our previous research infrastructure with a similar focus was used by more than 20 research groups with international collaborations.
Results
The overall result of the project is that the new research infrastructure is now ready for use, ie. data has been delivered from the relevant register holders to Umeå SIMSAM Lab, the data files have been loaded into database engines to make the data searchable and a metadatabase document describing variables and populations has been produced as research support.
The work within the project has been carried out in several steps. Initially, an application was written to the Ethical Review Board (now the Ethical Review Authority) to be allowed to process sensitive personal data regarding health. According to the Ethics Review Act, the processing of personal data must be clearly linked to a limited research task, which entails challenges for something as general as a research infrastructure. A successful application for ethics requires a developed research plan that enables the board to weigh the risks that the research could have for research persons in relation to the benefits of the research. In the ethics application, we developed a research plan focusing on how social inequalities in welfare and health develop over the life cycle.
With the support of an approved ethics application, we turned to a number of authorities / register holders to probe the terrain regarding possible disclosure of data to Umeå SIMSAM Lab. Even with an approved ethics application, authorities make their own decisions in regard to giving researchers access to data. This means that we had to have a discussion with each of the authorities regarding desired variables and populations, most extensively with the National Board of Health and Welfare. In that negotiation, we had to make certain concessions that resulted in some requests for data being dropped.
Below is a condensed description of the content of the new research infrastructure. The population consists of all individuals registered in Sweden between 1960 and 2018. From registers at Statistics Sweden there is information taken from the Population and Housing Censuses (FoB 60-90), and annual register-based socio-demographic information which is partly available from the late 1960s, and in more detail from 1990 onwards. The information we have received from SCB is basic demographic information such as gender, age, country of birth and family connections, education, school grades, employment, labor market situation, income, housing situation and geographical location of dwellings and workplaces.
From the National Board of Health and Welfare, we have been able to access information taken from the Cause of Death Register (1960-), the Patient Register inpatient care (1987-), the Patient Register outpatient care (2001-), the Medical Birth Register (1973-) and the Medicines Register (2005-). Some of the variables are main and underlying causes of death; diagnoses and care times; information about children and mother, i.e. child height and weight, Apgar assessment, diagnoses, maternal height and weight, parity and diagnoses, and prescriptions and type of medicine prescribed.
From the Swedish Social Insurance Agency, there is information on sickness and rehabilitation allowance (94-), sickness and activity allowance (94-), assistance allowance (94-), disability allowance (03-), care allowance (03-) and temporary parental allowance (94-). In addition, there is diagnostic information (ICD-10) for episodes of sickness benefit.
Regarding the National Register for Celiac Disease in Children, there is information on diagnosis, date of diagnosis, symptoms, serology and biopsy. The salute initiative is a health initiative for expectant parents and children. Here is self-reported information about life situation, living habits and health. This data set also contains information about 3-year-olds in child health care. For this group, there is information on, for example, weight and height, food and toothbrushing habits, socio-emotional ability and parental support.
Use of infrastructure and research
As the last parts of the data have recently been delivered, quality assurance of data is still in progress before the start-up of the infrastructure. Some withdrawals for research groups have been made, and new research is being planned. For example, we have a new collaboration with the Sheffield Methods Institute and the University College of Western Norway in Norway on the importance of housing segregation for human health. In this research, we intend to use a recently developed method to identify sharp boundaries in urban landscapes (Social Frontiers) between socio-economic and ethnic groups, and its consequences for people's life chances and health.
In another project, we plan to study social inequalities in health and welfare over the life cycle among Sami (in comparison with the Swedish population at large), in collaboration with researchers at Umeå University, the Swedish Sami National Association (SSR) and the Sami Parliament. For this research (funded by other means), we have received an approved supplementary application to the Ethical Review Authority for the addition of a number of register variables that approximately identify the Sami population. With the help of these data, research on Sami health and welfare in Sweden is planned.
The new research infrastructure will be an important resource in applications for funding for postdoctoral programs for young researchers. We intend to give younger researchers the opportunity to improve in register-based research in various research fields that fall within the research infrastructure's ethics approval. Umeå SIMSAM Lab has previously had a successful collaboration with the Kempe Foundations, which financed a number of postdoc positions. Based on the new research infrastructure, we hope for a renewed collaboration with them and other interested funders.
Technical issues and deviation from plan
We have no technical or method-related problems to report. Overall, the project has followed the original project plan to create a new research infrastructure in which researchers will have access to demographic, socio-economic and health-related register data.
Integration into organization and maintenance
Umeå SIMSAM Lab has attracted the attention of Umeå University, which has allocated funds for the operation of the lab and internationalization activities. The steering group members' departments are benevolent towards the lab and view our commitment positively, which makes it possible for us to use part of our time to manage and develop the lab in times of both small and large budgets. Consistently low operating costs and general cost control make the lab quite financially resilient to variation in the number of new projects over time. The steering group's ambition is that Umeå SIMSAM Lab and its research infrastructure will remain for many years to come, which we will achieve by initiating new projects and welcoming other research groups' projects and commitments. Our long-term goal is to gradually shift the responsibility for the lab to a younger generation of researchers working with register data.
Accessibility and Open Science
The new infrastructure is available to anyone interested. However, a restriction on the use of data in the new infrastructure is that proposed projects must fall within the framework of the infrastructure's ethical approval. Umeå SIMSAM Lab's steering group reserves the right to assess incoming applications in that regard. An additional restriction is that the lab premises have a limited number of workplaces. The lab's routines regarding data security state that individual data may never leave the lab's locked premises, which means that all project participants who wish to work with their customized datasets must do so in the lab's premises at Umeå University. If the interest in the new research infrastructure turns out to be very large, the number of workplaces may become a limitation.
International collaborations
In addition to the research environments mentioned above, Umeå SIMSAM Lab collaborates with Professor Eva Cantoni, University of Geneve, with whom we have developed methods for dealing with “missing data”, which has been tested on data from the Umeå SIMSAM Lab.
Publications
At the time of writing, no work on the new research infrastructure has been published. The publication below describes the older research infrastructure at Umeå SIMSAM Lab. There are similarities between the old and the new infrastructure. The text provides an overview of the content and structure of the new infrastructure. Some important differences are that the data now extends to 2018 and that the variable set differs to some extent - compare with the overall description of the infrastructure above (Results).
Lindgren, U., Nilsson, K., de Luna, X. & Ivarsson, A. (2016): Data Resource Profile: Swedish Microdata Research from Childhood into Lifelong Health and Welfare (Umeå SIMSAM Lab). International Journal of Epidemiology, 45: 4, pp. 1075-1075g.
Web pages
https://www.umu.se/forskning/infrastruktur/umea-simsam-lab/
The project aimed to develop a new research infrastructure at Umeå SIMSAM Lab. By compiling individual-level register data from sources that include demographic, socio-economic and health-related factors, the project has produced to a new research infrastructure that makes it possible to study societal challenges regarding childhood and its significance for lifelong health and welfare. Our hope is that this new research infrastructure will be an important resource for many research groups who wish to do research in this area in the coming years. We have high hopes as our previous research infrastructure with a similar focus was used by more than 20 research groups with international collaborations.
Results
The overall result of the project is that the new research infrastructure is now ready for use, ie. data has been delivered from the relevant register holders to Umeå SIMSAM Lab, the data files have been loaded into database engines to make the data searchable and a metadatabase document describing variables and populations has been produced as research support.
The work within the project has been carried out in several steps. Initially, an application was written to the Ethical Review Board (now the Ethical Review Authority) to be allowed to process sensitive personal data regarding health. According to the Ethics Review Act, the processing of personal data must be clearly linked to a limited research task, which entails challenges for something as general as a research infrastructure. A successful application for ethics requires a developed research plan that enables the board to weigh the risks that the research could have for research persons in relation to the benefits of the research. In the ethics application, we developed a research plan focusing on how social inequalities in welfare and health develop over the life cycle.
With the support of an approved ethics application, we turned to a number of authorities / register holders to probe the terrain regarding possible disclosure of data to Umeå SIMSAM Lab. Even with an approved ethics application, authorities make their own decisions in regard to giving researchers access to data. This means that we had to have a discussion with each of the authorities regarding desired variables and populations, most extensively with the National Board of Health and Welfare. In that negotiation, we had to make certain concessions that resulted in some requests for data being dropped.
Below is a condensed description of the content of the new research infrastructure. The population consists of all individuals registered in Sweden between 1960 and 2018. From registers at Statistics Sweden there is information taken from the Population and Housing Censuses (FoB 60-90), and annual register-based socio-demographic information which is partly available from the late 1960s, and in more detail from 1990 onwards. The information we have received from SCB is basic demographic information such as gender, age, country of birth and family connections, education, school grades, employment, labor market situation, income, housing situation and geographical location of dwellings and workplaces.
From the National Board of Health and Welfare, we have been able to access information taken from the Cause of Death Register (1960-), the Patient Register inpatient care (1987-), the Patient Register outpatient care (2001-), the Medical Birth Register (1973-) and the Medicines Register (2005-). Some of the variables are main and underlying causes of death; diagnoses and care times; information about children and mother, i.e. child height and weight, Apgar assessment, diagnoses, maternal height and weight, parity and diagnoses, and prescriptions and type of medicine prescribed.
From the Swedish Social Insurance Agency, there is information on sickness and rehabilitation allowance (94-), sickness and activity allowance (94-), assistance allowance (94-), disability allowance (03-), care allowance (03-) and temporary parental allowance (94-). In addition, there is diagnostic information (ICD-10) for episodes of sickness benefit.
Regarding the National Register for Celiac Disease in Children, there is information on diagnosis, date of diagnosis, symptoms, serology and biopsy. The salute initiative is a health initiative for expectant parents and children. Here is self-reported information about life situation, living habits and health. This data set also contains information about 3-year-olds in child health care. For this group, there is information on, for example, weight and height, food and toothbrushing habits, socio-emotional ability and parental support.
Use of infrastructure and research
As the last parts of the data have recently been delivered, quality assurance of data is still in progress before the start-up of the infrastructure. Some withdrawals for research groups have been made, and new research is being planned. For example, we have a new collaboration with the Sheffield Methods Institute and the University College of Western Norway in Norway on the importance of housing segregation for human health. In this research, we intend to use a recently developed method to identify sharp boundaries in urban landscapes (Social Frontiers) between socio-economic and ethnic groups, and its consequences for people's life chances and health.
In another project, we plan to study social inequalities in health and welfare over the life cycle among Sami (in comparison with the Swedish population at large), in collaboration with researchers at Umeå University, the Swedish Sami National Association (SSR) and the Sami Parliament. For this research (funded by other means), we have received an approved supplementary application to the Ethical Review Authority for the addition of a number of register variables that approximately identify the Sami population. With the help of these data, research on Sami health and welfare in Sweden is planned.
The new research infrastructure will be an important resource in applications for funding for postdoctoral programs for young researchers. We intend to give younger researchers the opportunity to improve in register-based research in various research fields that fall within the research infrastructure's ethics approval. Umeå SIMSAM Lab has previously had a successful collaboration with the Kempe Foundations, which financed a number of postdoc positions. Based on the new research infrastructure, we hope for a renewed collaboration with them and other interested funders.
Technical issues and deviation from plan
We have no technical or method-related problems to report. Overall, the project has followed the original project plan to create a new research infrastructure in which researchers will have access to demographic, socio-economic and health-related register data.
Integration into organization and maintenance
Umeå SIMSAM Lab has attracted the attention of Umeå University, which has allocated funds for the operation of the lab and internationalization activities. The steering group members' departments are benevolent towards the lab and view our commitment positively, which makes it possible for us to use part of our time to manage and develop the lab in times of both small and large budgets. Consistently low operating costs and general cost control make the lab quite financially resilient to variation in the number of new projects over time. The steering group's ambition is that Umeå SIMSAM Lab and its research infrastructure will remain for many years to come, which we will achieve by initiating new projects and welcoming other research groups' projects and commitments. Our long-term goal is to gradually shift the responsibility for the lab to a younger generation of researchers working with register data.
Accessibility and Open Science
The new infrastructure is available to anyone interested. However, a restriction on the use of data in the new infrastructure is that proposed projects must fall within the framework of the infrastructure's ethical approval. Umeå SIMSAM Lab's steering group reserves the right to assess incoming applications in that regard. An additional restriction is that the lab premises have a limited number of workplaces. The lab's routines regarding data security state that individual data may never leave the lab's locked premises, which means that all project participants who wish to work with their customized datasets must do so in the lab's premises at Umeå University. If the interest in the new research infrastructure turns out to be very large, the number of workplaces may become a limitation.
International collaborations
In addition to the research environments mentioned above, Umeå SIMSAM Lab collaborates with Professor Eva Cantoni, University of Geneve, with whom we have developed methods for dealing with “missing data”, which has been tested on data from the Umeå SIMSAM Lab.
Publications
At the time of writing, no work on the new research infrastructure has been published. The publication below describes the older research infrastructure at Umeå SIMSAM Lab. There are similarities between the old and the new infrastructure. The text provides an overview of the content and structure of the new infrastructure. Some important differences are that the data now extends to 2018 and that the variable set differs to some extent - compare with the overall description of the infrastructure above (Results).
Lindgren, U., Nilsson, K., de Luna, X. & Ivarsson, A. (2016): Data Resource Profile: Swedish Microdata Research from Childhood into Lifelong Health and Welfare (Umeå SIMSAM Lab). International Journal of Epidemiology, 45: 4, pp. 1075-1075g.
Web pages
https://www.umu.se/forskning/infrastruktur/umea-simsam-lab/