Testimonials


“Oh, what are the benefits? Well more people in Ontario are doing health services research. Prior to these initiatives, more explicitly the cd-link initiative, the only people privileged enough to be in this building could do this research. The Institute for Clinical Evaluative Sciences (ICES), as a publicly funded organization, I think we have the obligation to make this available for other researchers.”

“If we broaden the scope by allowing people to use our data outside of this building then obviously more things are going to be done. A lot of people have research ideas and there’s just not enough time for us to fulfill them all. If we make the data available and let people do their own research, I think we all benefit.”

Refik Saskin, Msc, Program Lead Analyst, Programming & Biostatistics Institute for Clinical Evaluative Sciences

 


“I like it (PARAT) because it’s an objective measure. It tells me what the risk is and I know that there’s a methodology and sound rationale to back it up,” says Dr. Ann Sprague, BORN’s Scientific Manager.

“It’s insurance that we’re not going to inadvertently do a disclosure that we shouldn’t.” Word has spread through the various communities that this rich data set is accessible and that PARAT’s risk assessments consider the security measures of data handlers and data recipients to set the appropriate release thresholds. The result has dramatically changed the interactions between Dr. Sprague and researchers, making the process more collaborative while streamlining decision making.

“It protects both us and the researcher. It protects us in helping to meet our requirements under PHIPA and it protects the researcher from any inadvertent disclosure or re-identification. Ultimately, it protects the mothers and babies of Ontario.”

Dr. Ann Sprague, BORN’s Scientific Manager, BORN (Better Outcomes Registry and Network) Ontario

 


“In privacy what was conspicuously absent was this sort of empirical benchmark,” says Dr. Carol Gentile, the Chair of the CHEO Research Institute Research Ethics Board.

“You found yourself reading more theoretically-based sort of dissertations from the US and from Canada -- which has a language all its own -- but didn’t necessarily have the practical sort of guidelines to manage these situations.”

“It’s hard to dispute when you’ve got the web link because basically it’s an empirical statement rather than one that’s subjective. That’s the real strength in it,” she says.

“It would be nice to see submissions having already consulted the tool and then relaying that the threshold is at a certain point and that there are no concerns with respect to re-identification,” she says.

“I think that the investigators can do the analysis themselves and then protocols would have a much easier time during the REB review.”

Dr. Carol Gentile, the Chair of the CHEO Research Institute Research Ethics Board.

 


"Without this technology a lot of research we want to do would grind to a halt."

Dr. Mark Walker, scientific Director and co-director of BORN, soon to be the largest registry of its kind in the world (supported by Privacy Analytics software)

 


“It’s peace of mind knowing that we’ve done everything that is possible to meet industry standards for de-identification.”

“Khaled El Emam has a great reputation and having him and his product behind what we’re doing, I think was very impressive, especially at the Privacy Commission level.”

Dr. Craig Earle, Program Leader, Health Services Research, Ontario Institute for Cancer Research and Cancer Care Ontario

 


“PARAT provides a sound evidentiary basis for substantiating the claim that personal information is de-identified. It also allows for appropriate security safeguards to protect the data based on an empirically assessed risk of re-identification in the recipient environment.”

Anita Fineberg, LL.B., CIPP/C, Privacy Lawyer and Consultant

 


“PARAT has democratized research data . If you can de-identify the data and you get it down to a reasonable level then all of a sudden we can make it available to researchers who have ordinary security not extra-ordinary security.”

"Even if you are a prescribed entity it’s going to be cheaper for you in the long run to use something like PARAT rather than hiring people to do this.”

“Privacy and confidentiality just don’t come up as important topics at board discussions anymore. Before, we might spend hours on discussions about privacy and confidentiality. PARAT has taken privacy away as an important problem to be solved.”

“As data is becoming easier to access, I think there’s going to be lots of sources of data out there. By being confident about the quality and safety of our data from a privacy perspective, I think that is a competitive benefit.”

Dr. Karim Keshavjee, CEO of InfoClin, Data Architect and EMR Consultant to Canadian Primary Care Sentinel Surveillance Network (CPCSSN)



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