Mobilizing Evidence to Impact Policy: PolicyWise for Children & Families
Posted by: Chantel Ridsdale, Research Data Canada Intern
PolicyWise for Children & Families (PolicyWise) is an Alberta-based non-profit established in 2003, dedicated to conducting, funding, and mobilizing research for evidence-informed policy and practice for the well-being of children and youth. PolicyWise works in partnership with the Government of Alberta, the community, and Alberta Universities.
In 2007, PolicyWise developed the Child and Youth Data Laboratory (CYDL), which has highlighted the importance of linking and analyzing administrative data across Government of Alberta Ministries. The philosophy behind this innovative initiative was simple:
- Start small, create value sooner
- Gain policy-maker and government support to expand evidence-based policy
As a pilot project, the CYDL showcases the potential value of data linkage. Today CYDL receives data from five Ministries:
- Alberta Human Services (lead ministry)
- Alberta Education
- Alberta Advanced Education
- Alberta Health
- Alberta Justice and Solicitor General
Alberta Indigenous Relations is also a valued partner in this initiative, but does not provide data.
Linked cross-ministry data at this scale is quite innovative within Alberta, and its analysis has immense potential. However, linked data has special privacy and ethical considerations: for example, data obtained from the Ministry of Justice and Solicitor General includes confidential and highly sensitive information. These considerations emphasized the need to utilize best practices in anonymization and data management.
PolicyWise collaborated with the Ministries to develop a privacy-preserving data anonymization process so that identifiers such as first and last names were removed prior to analysis. The process uses a hashed algorithm, assigning a unique identifier for each record. Each ministry uses the same algorithm and produces the same unique identifier for the same individual. The unique hashed identifiers are then linked to facilitate cross-Ministry analysis while still preserving confidentiality and privacy. PolicyWise hopes that by demonstrating the utility of linked data, this practice will be used elsewhere to improve the foundation for evidence-based policy development.
PolicyWise has seen a great deal of interest in utilizing the linked data, but the data from the CYDL initiative is not available for external use. As a result, they developed the Secondary Analysis to Generate Evidence (SAGE), a repository for research[i], service delivery[ii], and administrative data[iii] about child and youth development, health, and well-being.
Although many data sharing initiatives exist, there doesn’t seem to be any in Canada that are comparable to the SAGE initiative. This is due to a few reasons:
- SAGE is facilitated by an organization at arm’s length from both government and universities
- SAGE houses individual level data; and
- SAGE allows for data sharing in a controlled manner (i.e. data sharing agreements, proposal review processes, etc.) due to the confidential and sensitive nature of the data housed.
PolicyWise not only provides access to this rich data, but also helps users leverage expertise in:
- Data management and documentation;
- Data linkage and analytics;
- Building partnerships with stakeholders and knowledge users; and
- Mobilizing knowledge
SAGE uses data management practices such as standardized metadata, and uses a form of DDI (Data Documentation Initiative) for their study and variable documentation. DDI is a complex but rich and granular metadata standard used in the social sciences, to provide machine-readable documentation.
Through this initiative, SAGE aims to improve outcomes for Alberta’s children, youth, families and communities through using and combining data in new ways. This data sharing can then inform social, educational and health policy, as well service planning.
SAGE has numerous collaborations, such as with the University of Alberta and University of Calgary, to ensure that it remains interoperable with existing infrastructure.
PolicyWise is an incredibly collaborative and forward-thinking organization that hopes to spur change in the wider research community. It exemplifies what a smaller organization can do when it embraces data management processes and leverages the expertise of the Canadian research data community. You can learn more about PolicyWise, CYDL or SAGE on their website, or on Twitter, Facebook, YouTube, and Vimeo.
PolicyWise also organizes various events; their next event is Inspiring Connections: A Research and Practice Showcase on November 29, 2016.
[i] Research Data – Data that are used as primary sources to support technical or scientific enquiry, research, scholarship, or artistic activity, and that are used as evidence in the research process and/or are commonly accepted in the research community as necessary to validate research findings and results. All other digital and non-digital content have the potential of becoming research data. Research data may be experimental data, observational data, operational data, third party data, public sector data, monitoring data, processed data, or repurposed data.
[ii] Administrative Data – Information collected primarily for administrative, and not research purposes. It includes profiles and curriculum vitae of researchers, the scope and impact of research projects, funding, citations, and research outcomes. This type of data is collected by government departments and other organisations for the purposes of registration, transaction and record keeping, usually during the delivery of a service. These data are also recognized as having research value.
[iii] Service Delivery Data – Data gathered from delivering social services.