Scientific research in youth protection in Quebec is lagging behind and, in many cases, is even compromised by the accumulation of restrictions on the protection of information.
More than 130 researchers recently wrote to the Ministers of Health, Sonia Bélanger, and Social Services and Homelessness, Lionel Carmant, asking them to intervene to give them access to the administrative data of youth protection directorates across the province.
According to these researchers, the coming into force in 2022 of Bills 25 and 5, respectively, on the protection of personal information and on health and social services information, has added a series of obstacles to accessing administrative data. These barriers have meant that it can take up to four or five years to obtain this access, while funding for their projects is provided over periods of two to five years.
Data inaccessible after 18 years
Worse still, these laws led to an amendment to a section of the Youth Protection Act (YPA) that completely closed access to the data of young people in the DYP once they turn 18. “We wanted only the young person to be able to access his or her file after he or she turns 18, so that it could not be just anyone who goes through it, which is completely legitimate,” says Geneviève Pagé, a professor in the Department of Social Work at the Université du Québec en Outaouais who also leads a research team on placement and adoption and youth protection. His work leads him to follow the trajectories of young people in the DYP during and after this passage, except that with the legislative amendments, “researchers can no longer access information that was in the young person’s file once he or she has reached the age of 18.”
However, administrative data is anonymized and these experts have always had ethical obligations regarding their use, says Sonia Hélie, a researcher at the University Institute for Youth in Difficulty. “We have known for years that we cannot access the young person’s clinical record once he or she has reached the age of majority. On the other hand, we have begun to interpret (the law) as if it included the administrative databases that we use to carry out projects, the large analyses of provincial cohorts. It’s denominalized data, it’s all coded, it’s very secure data, but here they have broadened the application of this article to administrative data, so that we can no longer produce portraits, we can no longer include young people who have reached the age of majority when we extract the data, which makes no sense.”
Rachel Langevin, an associate professor at McGill University, conducts research on mistreatment, for example. “I’m very interested in intergenerational continuity. Why children of parents who are victims of abuse are more at risk of being abused in turn. And what we observe are some kind of intergenerational cycles in mistreatment.”
This research will not be able to move forward. “I couldn’t even do my project today with the new law because I needed to get the data in the youth protection of mothers. Because I work intergenerationally, it’s important for me to know if mothers have experienced abuse, what impact it has had on their health, how these impacts may have had an impact on their child. But we can’t do that anymore right now,” explains Langevin.
Confusion across the network
Even before the amendment to the YPA was made, Bills 25 and 5 alone had led to widespread confusion across the network, says Hélie. “When we want to produce provincial portraits in youth protection, it means that we have to address 16 institutions (the regional CISSS and CIUSSS), but there is no harmonization from one institution to another. Sometimes, hundreds of forms must be completed throughout Quebec to have access and make a provincial portrait. Everyone is subject to the same law, but each institution has the prerogative to have its own forms, to ask its questions a little differently, so it’s very energy-intensive for the research teams. If we have four-year grants, but it takes us three and a half years to have access to the data, the grant ends and we haven’t fulfilled our commitments, which is very problematic.”
The wait imposed by the regulatory veil that weighs on the DYP’s data is so great that researchers are unable to complete their research projects within the deadlines imposed by the granting agencies, whose money is running out in the meantime. “All of this is money from public funds, from CIHR (Canadian Institutes of Health Research) that is wasted waiting, but it’s also student projects that don’t come to fruition during that time,” says Langevin.
Discouraged students and researchers
The situation is such that they are even discouraged altogether at the university level, says Pagé. “If it takes a year, two years, three years before I have access to data, I almost have to forbid my students to try to do a youth protection project through access to information requests. We’re going to take other means, we’re going to try to recruit them on social networks, for example, or we’re going to try to recruit them elsewhere because the process of getting access to information through the institutions is so long and complex that they will never be able to finish on time. Even in my PhD, I’m starting to discourage people from doing it.”
Langevin agrees: “I have several doctoral students who had to do their research project in youth protection, so to develop this expertise, this very complex ability to analyze. Because of the delays, I didn’t want to postpone their graduation, it would have postponed the entry of psychologists into the market, the entry of researchers into the field.”
Beyond the students, the obstacle course to obtain data discourages even experienced researchers, worries Hélie. “It’s a hindrance for researchers and there are fewer who will be interested in it, That’s two or three super experienced researchers who could contribute to advancing our knowledge who tell me, ‘I don’t touch this anymore’. Data in youth protection is too complicated, we are not able to access it, which means that we deprive ourselves of super expert people.”
She is not shy about saying that these restrictions “do not have that much added value for the protection of families’ information. It’s more for the protection of the establishments. It’s as if we were aiming for zero risk when ultimately there is no such thing as zero risk.”
3rd letter to Carmant
This is the third letter on this subject that has been sent by groups of researchers to Minister Carmant. He is therefore very aware of the situation. And according to all the stakeholders with whom The Canadian Press spoke, the authorities agree on the need to do something to restore access to this data. “The Ministry of Health and the national DYP are pushing for these procedures to be facilitated,” says Hélie, “but it doesn’t depend on them that much in the end. The national DYP tells us that it needs to have reliable data and portraits of young people in youth protection to make its decisions.”
In fact, the solution lies on the political side, since the adjustments that would make it possible to restore access must be made in Bills 25, 5 and the YP, as illustrated by Hélie in the case of the data of DYP children who have reached the age of majority. “When we consulted the lawyers at Santé Québec, they told us that they agree that this section (of the YPA) is a mistake, that it was not the legislator’s goal.” Pagé adds that “each time we get a bit of the same welcome, that is to say: ‘oh yes, we understand the problem, you’re right’. But it’s as if no one really knows who can solve these problems and it’s a ball thrown between Santé Québec and the ministry in terms of who is responsible for what.”
No response from politicians
Speaking of throwing the ball, the offices of Bélanger and Carmant both referred The Canadian Press to the Ministry of Health and Social Services, which, 24 hours later, had not responded to us. Faced with our insistence, Carmant’s office promised us an answer that we are still waiting for.
In the meantime, says Langevin, “by the time our data comes out, we’re almost going to be a little past date with our results, because the data were extracted as of 2022. Let’s say I publish my results in 2027, it’s already been five years since I extracted my data. When you’re in a field like this where you aim to influence politics, you have to give real-time information to adjust policies and practices in the workplaces. Having data that is five years old is really not ideal,” she says.
–This report by La Presse Canadienne was translated by CityNews
