The British Columbia Centre for Disease Control (BCCDC) Clinical Prevention Services (CPS) Sexually Transmitted Infections and Blood-Borne Infections (STIBBI) surveillance team has partnered with PAN to create a proposed framework for governance of STIBBI public health data. This includes engagement of patients, people with lived and living experiences (PWLLE), and community in the surveillance and research conducted with databases that integrate public health data related to STIBBIs. This will allow us to enhance engagement of community in interpreting STIBBI public health surveillance data and create a renewed set of patient and community-oriented hepatitis C (hep C) and HIV research and surveillance priorities to take forward, including but not limited to:
- What indicators and population that should be included when reporting STIBBI data
- Ways to make STIBBI information and data more meaningful, representative and engaging for communities
- Strategies to ensure STIBBI reporting does not lead to greater stigma
- Ways to modify data sharing processes, in regard to how data access should be granted
Public health data related to STIBBIs, including cases and tests, are housed or integrated in British Columbia (BC) in several different databases. These databases are used for surveillance, monitoring, evaluation, and research related to STBBIs including HIV, hepatitis B virus (HBV), hepatitis C virus (HCV), infectious syphilis, chlamydia, and gonorrhea. Two such databases include the BC Public Health Reporting Data Warehouse (PHRDW) and the Integrated Data and Evaluative Analytics (IDEAs) Cohort (previously the BC Hepatitis Testers Cohort).
The PHRDW database is used by BCCDC to create key provincial STBBI surveillance reports, such as monthly reports on HIV cases or quarterly syphilis indicator reports. It is also able to be used for monitoring and evaluation of public health programs, such as creating the STOP HIV Program Quarterly Indicator Reports, and research that falls under the acceptable uses of data in the PHRDW Governance Framework. The PHRDW database is created under the auspices of Public Health Act, then the STIBBI DataMart is created within that upon approval by data stewards and through Information Sharing Agreements where required.
Community Cohort Data Engagement Strategy Draft – with contributions from PWLLE and community-based organizations, will include recommendations of how a Community Leadership Council (CLC) for STBBI public health data should be set-up and implemented.
The SPARTA project has established an environment that allows PWLLE and community partners to make meaningful contributions, lead in discussion and have a voice in decision-making throughout each of the four defined phases. All CLC members are actively engaged in the co-design of all outputs produced throughout the project.
During Phase 1 of the project, an Environmental scan and annotated bibliography were completed of Community Advisory Boards/Groups both within and outside BC, that informed the creation of a Community Engagement framework. This included the design and governance structure of a Community Leadership Council (CLC) that included processes for meaningful contribution and collaboration.
During Phase 2 of the project PWLLE and community partners were engaged alongside BCCDC staff and PAN team members to form the first CLC. Monthly CLC meetings are held, including bi-monthly capacity bridging sessions, where members have space to share their perspectives and contribute to the ongoing work of the Community Engagement framework. These sessions are designed to inform required capacity bridging including ongoing supports/resources that may be required for future SPARTA CLC members to be actively engaged with this work, along with encouraging accessibility of data surveillance with community. Through this collaborative work, new priorities for STBBI reporting and surveillance have also been identified.
The project is currently in Phase 3, where the CLC has contributed to the co-development of a Data Request form and User Guide while establishing the pilot data request process. The SPARTA team is also looking forward to Discussion Circles that will be held later this year to engage community members for additional feedback surrounding the proposed Community Engagement framework and Data Request process.
The SPARTA CLC has co-designed a number of knowledge mobilization pieces that have been created with the intent to make data engagement in BC more accessible to community.
Cheat Sheet – This clear language document was designed to remove language barriers about common phrases, terms, and diseases that are discussed within the scope of the SPARTA project and applicable to data requests that might be considered by community.
| STIBBI Epi & Surveillance 101 Video – this is an introduction into the BCCDC CPS STIBBI Epi and Surveillance Team and Data systems that includes important basic concepts for people to understand about STIBBI surveillance, an overview of the BCCDC surveillance processes, and some of the routine surveillance reports and outputs that are currently prepared by the BCCDC. To watch the video presentation in full screen view, click the four arrows at bottom right of thumbnail view. | |
| Enhancing community access to data and engagement in surveillance of Sexually Transmitted and Blood-Borne Infections (STBBIs) – To view video,click here or click on the image to be taken to the BC CDC site host. |  |
| Making data work for you: a new tool for support, education, outreach, and advocacy Learn how the CLC worked to support BC’s new STBBI dashboard from the BC Centre for Disease Control (BC CDC). To watch the video presentation in full screen view, click the four arrows at bottom right of thumbnail view.
Try the Dashboard! |
|
| Bridging the Gap: Empowering Communities in Enhancing Access to Public Health Surveillance Data – poster presentation at Canadian Association for HIV Research Conference, April 2024. Click here for larger view or click on image at right to see poster in larger size |  |
Try the Dashboard!
Head to this page where there is a big button that says ‘CPS Dashboard’ which will take you to the actual dashboard page.
Engagement Framework – Check back for a downloadable version!
Data Request Form and User Guide – Check back for a downloadable version!
For more information on the SPARTA Project, please contact Jennifer Demchuk at [email protected]