Networks of Data for Improving Health Care
Dr. Ana Johnson refers to it as the “obesity paradox” − a situation in which it is advantageous to be overweight in some medical scenarios. In a recent study, Johnson, associate professor in the Department of Public Health Sciences, looked at patients undergoing cardiac surgery and found that, although obesity is a risk factor for cardiovascular disease, those who were overweight or obese actually fared better and ended up costing the medical system less than those with a lower body mass index (BMI). “This is somewhat surprising in light of the current public health message,” she says, “in that this research shows that there are times when it is beneficial to be obese.”
This is research Johnson, a health economist, was able to conduct thanks to the Institute for Clinical Evaluative Sciences (ICES) Queen’s, where she happens to be site director. ICES, a not-for-profit research institute headquartered in Toronto on the campus of Sunnybrook Health Sciences Centre, stores data about Ontario’s health care delivery and outcomes − survey data, anonymous patient records, clinical and administrative databases − along with data related to First Nations and Métis peoples, developmental disabilities and federal immigration.
“So for example, when you go to the hospital or see a doctor, there are records of that,” Johnson explains. “And those records get stored for billing, diagnostic and administrative purposes. ICES allows us to conduct research using all those data.”
What I’m interested in, ultimately, is looking at how much illnesses
and treatments cost, and whether current therapies are effective.
For Johnson, it was those data that helped her come to conclusions about resources and costs in cardiac surgery. Together with her colleagues in the Department of Anesthesiology and Perioperative Medicine, the team was able to draw on patient data from 53,224 individuals in Ontario over a nine-year period. Because billing data don’t take a patient’s weight or height into account, they were then able to analyze other databases with demographic and further medical information, ultimately merging the data together.
“What I’m interested in, ultimately, is looking at how much illnesses and treatments cost, and whether current therapies are effective,” says Johnson, further explaining that she and other ICES investigators, including students, have used the administrative data to study how health care resources are used in everything from gastric and lung cancer therapy, to foot and ankle sprain treatment. And all of it can play a role in shaping health policy down the road, leading to a stronger health care system and a healthier population.
Before 2007, however, similar research would only have been possible for someone working at or in collaboration with a researcher based at the Sunnybrook site. Now, analysts working with researchers at satellite sites, including ICES Queen’s, which was established in 2007 as the first satellite ICES centre in Ontario, are able to access ICES data through a network of fibre optic cables that keep the data secure at the Sunnybrook site.
“The actual patient data, which are highly confidential, never leave that site,” Johnson explains from her office in Abramsky Hall, where the ICES Queen’s hub is housed behind two sets of locked doors, along with other security measures. “Analysts working with researchers access the data from here.” She explains that new initiatives are also in place for “research-ready” data, as well as analytic tools, accessible online, in a bid to better support researchers, students, policy makers and others.
Johnson, who first arrived at Queen’s in 2005 as the Canada Research Chair in Health Policy, was part of the team who set out to bring an ICES satellite site to Kingston. It was a first, both for ICES and for Queen’s. After nearly two years, they achieved their goal, while at the same time paving the way for similar partnerships at other universities − University of Ottawa, University of Toronto and Western University all now boast ICES satellite sites.
In the early days, Johnson and four others were the only ICES scientists at Queen’s who were able to conduct research using ICES data. When she took over as director in 2009, she did so intent on increasing access at the Queen’s site, which now comprises 20 ICES scientists and fellows, as well as researchers from numerous departments at Queen’s.
The research being done at ICES has tremendous potential
to change our world by influencing practice and policy.
And while she sees plenty of room for growth, Johnson is also conscious of the fact that funding for the centre must ultimately come from grants or other financial resources acquired by participating researchers. “In this model, researchers are charged a fee to access data, which helps to cover the cost of paying for the extensive security system.”
Johnson is now optimistic about plans for partnerships between ICES, which is Ontario-based, and similar networks of data in other parts of the country, which she says would expand the potential for research on a national scale, as well as other initiatives that would increase access to ICES data.
“The research being done at ICES has tremendous potential to change our world by influencing practice and policy,” says Johnson. “It’s satisfying to be involved in that process. I am excited about promoting the vast possibilities and enabling the involvement of more and more researchers. I am proud of the work that I, and staff at ICES Queen’s, have done so far. The growth potential for ICES is enormous, with continuous opportunities. This is a great time to be involved.”
(e)AFFECT Issue 9 Spring/Summer 2016
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Dr. Johnson's research