Health Data Research Network (HDRN) Canada’s Data Access Support Hub (DASH) was launched in early 2020 with the goal of providing coordinated data access support to researchers interested in data from multiple regions, and harmonizing data access processes across our partner data centres.
Since its launch, DASH has received great interest from researchers looking to access multi-regional data, with over 70 intake forms received from various disciplines, spanning topics such as mental health and substance disorders, pediatric kidney disease, medication optimization, predictors and outcomes of COVID-19, and more.
DASH has supported these requests by providing guidance related to study design, feasibility assessments and cost estimates to support grant applications, coordinated data assembly plans, and support for navigating local requirements. DASH is currently supporting over 30 active projects at various stages of the data access journey.
Development to date
DASH has also developed tools and processes to advance the vision of a more coordinated and streamlined data access process across regions.
As a start, we developed a Data Access Process Inventory on the DASH website which describes the requirements and procedures for accessing data at each partner organization.
From there, we developed an access workflow model which serves as a foundational tool for documenting our processes and identifying where centralization and harmonization are most needed.
A centralized Intake Form was implemented for DASH launch, and we identified early on the need to develop a centralized DASH Data Access Request (DAR) Form to reduce researcher burden from having to complete multiple local forms. We have focused our efforts over the last year to developing this form and associated coordinated processes that align with local requirements.
Through this work, we identified the need to develop an additional tool, the DASH Data Assembly Plan (DAP), to document project-specific data requirements in an organized and coordinated manner.
Internally, we also identified the need to improve our ability to track activities and progress for DASH projects and developed the DASH Application Tracker. This tool launched in June 2021 and has been instrumental in our ability to capture project statuses at each data centre, and will allow us to meet various reporting needs such as project and program monitoring and data quality.
We envision the DASH Portal to be the one-stop service on our website where researchers and DASH will access and maintain project information. We are working toward piloting the DASH DAR and DAP within the Portal by the end of March 2022.
As our distributed team works together to tackle the challenges of coordinating and harmonizing processes across a network of organizations, a recurrent theme has surfaced related to the challenge of obtaining approval for line-level data to be released outside of individual regions. DASH and other teams within HDRN Canada have been tackling this issue from a few different angles:
- First, by facilitating discussions with researchers and data custodians/partners to explore and clearly articulate the options available.
- We are also exploring new options for distributed analysis across centers and how technology could be leveraged in a coordinated way.
- Insights from the legislative analysis and ongoing use case work undertaken by the Privacy working group will also shed light on additional avenues that may exist to push these boundaries.
As we continue to optimize our processes, identify additional areas for harmonization and work closely with our partner organizations and other working groups across our Network, we hope to continue to improve researchers’ experiences in accessing multi-regional data in Canada.