Data matters only if people can use it. Members of the research community, in particular, have asked us to provide access to health system data in a more timely fashion. We’re listening. That’s why we are working to improve both the ease of access to our data holdings and the time it takes to make data available to our stakeholders, while protecting the privacy of Canadians.
We’ve been crafting a new data access strategy involving the entire data cycle, from the time data is submitted to us by our partners and stakeholders to the time we release it. At every point, we want to know what we can do to make the process of turning data into information more efficient for everyone involved. We owe it to our stakeholders and to the public.
CIHI’s Discharge Abstract Database (DAD) is our flagship data holding, collecting millions of hospital discharge records a year from every province and territory. The DAD provides a rich source of demographic, administrative and clinical data to help support research, analysis, health system management and policy decision-making.
So how do we get the DAD’s data to people sooner?
We considered building a DAD public use micro-data file (PUMF). A key element of a PUMF is that it prevents the re-identification of people. We asked Dr. Khaled El Emam and colleagues to study the idea. As the Canada Research Chair in Electronic Health Information at the CHEO Research Institute and University of Ottawa, Dr. El Emam is a leader in privacy research.
However, Dr. El Emam’s study—conducted in collaboration with CIHI and other research partners—concluded that while a PUMF would be suitable for basic analysis purposes, it is less useful for more complex research projects that require more detailed information. The study also concluded that to create a file for more complex health research, any privacy concerns could be resolved by using a data-sharing agreement.
The full article describing the study, “De-Identifying a Public Use Micro-Data File From the Canadian National Discharge Abstract Database" was published in September in BMC Medical Informatics and Decision Making.
So what now?
We’re examining a number of options, including the production of research analytical files. These files would contain a year or more of data. They would include details needed for more in-depth research and would be made available to our trusted customers through data-sharing agreements to ensure protection of privacy. Over the next year, we will explore the feasibility of producing research analytical files for the DAD and our Continuing Care Reporting System.
As part of our access strategy, we’re also going to be developing standards on turnaround times for customers. We want our customers to know what to expect from us. We want them to understand and be engaged in the data-sharing process.
“This new strategy is a big step, but one that we are keen to take,” says Jean-Marie Berthelot, Vice President, Programs. “Timely data is very important to better understand the health needs of Canadians, and people inside and outside of CIHI are looking forward to making it more readily accessible, while protecting privacy.”