Info-sharing agreements expand data access
17 September 2009
Information sharing agreements signed between the BC Ministry of Health Services (MoHS), the BC Vital Statistics Agency, and the University of BC (through Population Data BC) will greatly expand the breadth of data available for population health and health services researchers in Canada.
MSFHR-funded Population Data BC is a multi-university platform that is BC’s only pan-provincial population health data service. The agreements, signed in April 2009, enable data collected by the MoHS to be linked with other data holdings at Population Data BC, and made available to Canadian researchers for approved projects. “These agreements open the door to a huge range of opportunities for bringing cross-sectoral information together for research purposes,” says Dr. Kim McGrail, a board member and scientific advisor with Population Data BC and associate director of the UBC Centre for Health Services and Policy Research (CHSPR).
To illustrate the importance of linkages – between health services, educational, occupational, environmental and other data – McGrail gives the example of an epidemiologist investigating the long-term health and educational outcomes of children with cancer who survive the disease. “The only way to answer that question with any certainty is to link cancer treatment and diagnostic information with health services and educational outcome information,” says McGrail. “Without the ability to link these data sets that kind of research wouldn’t even be possible.”
“The vital statistics agency data will be very, very helpful for research purposes because it provides information on births, deaths, marriages and other activity occurring in the province,” adds McGrail. “It’s information that’s quite critical for research.”
With the agreements in place, Population Data BC is now developing a process for researchers to request linked data from a single source – what McGrail describes as “one-stop shopping”. The process will enable researchers to obtain the data in a secure and timely fashion, and to also receive support for learning how to use the data. “The ability to put all of this in one place, and then to provide some training and educational services as well, is a really big benefit to people,” McGrail says. “As we get our infrastructure in place and add to the data sets that are available, we’re anticipating that the demand and use for the services will grow quite rapidly.”
A committee of researchers provides Population Data BC with input on relevant data sources that the organization should add to data holdings, and also on the education and training needed in the research community. Population Data BC also consults a data stewards committee to ensure the organization is responsive to the needs of data stewards who are ultimately responsible for the data.
MSFHR is funding Population Data BC through the Foundation’s Technology/Methodology Platform program. “The platform funding and the whole process of putting an application together is what moved us from being a UBC-specific organization to one that really cuts across the province,” says McGrail. Population Data BC’s other current funders include the Canadian Foundation for Innovation and the BC Ministry of Advanced Education.
Population Data BC’s goal is to create the world’s most comprehensive data source for researchers in the area of human health, well-being and development. Compared to the rest of Canada and other places in the world, BC is reasonably far along in realizing that goal, says McGrail. “But from the perspective of where we see that we could potentially go and where we want to go, I’d say we’re still very much at the beginning,” McGrail says. “There’s still a lot of work to be done.”