Data Can Help Create a Powerful Picture

This blog is part of "Monitoring Matters", a special series of guest blogs by VPS Advisors.

By Adele Furrie

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I have spent my 62-year career dealing with data—designing, collecting, analyzing and disseminating it.

My first 40 years were at Statistics Canada, where I was mentored by some of the world’s leading survey methodologists and statisticians. During the last 13 years of my tenure with Statistics Canada, I had the privilege of leading the design, implementation and dissemination of the findings from the first and second national disability surveys. I worked closely with officials from all levels of government, as well as the disability community, to ensure that the data that were being collected met their collective needs.

Since my “retirement” from the government in 1996, I have continued to work both nationally and internationally in a similar capacity within the disability sector. As a member of the Technical Advisory Group for the development of the Government of Canada’s new disability data strategy, I have supported the development of innovative ways to use both survey and administrative data to inform the development of policies and programs that remove barriers to the full inclusion of Canadians with disabilities into all sectors of Canadian society. As an information management consultant, I have analyzed both survey and administrative data to inform changes to existing legislation, to evaluate programs and to develop standards for new legislation.

I’ve seen data create powerful pictures of Canada and Canadians and the lives they lead. And I’ve seen policies and programs developed as a result of those pictures. With this background, I believe I am in a unique position to share my opinion on the government’s proposed MAiD monitoring system.

One of the first things I learned at Statistics Canada was that the first step in designing a questionnaire is making sure that every question asked on the survey has a purpose. What is the justification for asking the question? How does it meet at least one of the data needs? This same philosophy can be applied to the collection of administrative data. As such, my first question is: Have we applied this philosophy to the data that are to be collected for MAiD? 

Any photographer knows that the lens you select has a profound effect on the picture you create. I would argue that the same is true for data. Data can be analyzed in many ways and can be used to create many pictures.  I think now is the time for the government to listen to us to ensure that the right data are collected as part of the MAiD monitoring system and that those data afford the opportunity for analysis using a “vulnerable persons lens”.

There has been acceptance by the government of this “vulnerable persons lens”. The Carter decision and Bill C-14 both include references to vulnerable persons and the need to protect them. The Vulnerable Persons Standard lays out evidence-based safeguards and requirements to protect vulnerable persons from coercion or abuse as a result of MAiD.  But for that lens to truly help us create the picture that is required, we need the data that will identify these vulnerable persons. This is the gap the proposed MAiD monitoring system—if it is expanded as per the VPS’s suggestions—could fill.

The data collection requirements as per the government’s proposed monitoring system—including date of birth, gender, type of usual place of residence, marital status, principal occupation and access to palliative care—is a good start but are insufficient to enable the use of the vulnerable persons lens.

The additional data suggested in VPS’s response to the proposed MAiD monitoring system—namely, details on the individual’s living conditions and circumstances, as well as treatment and intervention options, along with the gathering of other perspectives on the individual’s circumstances—would help to gather the data needed to apply the vulnerable persons lens through which we could begin to monitor and evaluate MAiD in Canada. The suggestions are built on the collective knowledge of the VPS advisors and provide a holistic picture of the individual’s life situation.

But have we gone about this in the right way? Are we not putting the cart before the horse? Should we not spend time together—government officials and VPS advisors—to first determine how we intend to use the information? From the perspective of the VPS advisors, we want to ensure that vulnerable Canadians are not over-represented in the population who submit an application for MAiD. What are our indicators? Government is committed to an evaluation after five years. What are the government’s evaluation indicators? Going back to my Statistics Canada experience, both government and VPS advisors need to ensure that they have all the data they need without unduly burdening the individual seeking MAiD and her/his network with questions that are irrelevant.

And suppose we can come to an agreement on what data should be collected using the Statistics Canada philosophy for data collection. What then? Suppose the analysis using the vulnerable persons lens shows that a segment of vulnerable Canadians are over-represented in the MAiD population. Suppose one region in Canada is over-represented in the MAiD population. What is over-representation? To answer those questions, we need to establish thresholds.

We shouldn’t be daunted by this task. Five years from now, we don’t want to be left asking “What if?” What if we’d stopped five years ago and thought about the data we need to create the clearest picture of MAiD in Canada. We have the opportunity now to stop, listen to each other and provide a robust base of information that can be used monitor MAiD using both the government’s lens and the vulnerable persons lens. Let’s seize that opportunity!

Adele Furrie is an information management consultant who has used data from statistical surveys and administrative files to inform governments about the issues facing vulnerable segments of their population. She believes that Canada’s proposed system for monitoring MAiD is incomplete and will not provide the data necessary to enable the application of a “vulnerable persons lens”.