Opinion

An app is not the answer: Government’s ‘free’ mental health tool raises significant privacy concerns

Active and would-be users of PocketWell, part of the Canadian government’s plan to combat the severe mental health impacts from the COVID-19 pandemic, must be made aware of the app’s under-explored implications.

PocketWell, made active in January, is the product of “a consortium of leaders in digital mental health and substance use support” who have launched “Wellness Together Canada (WTC) – an online platform that gives access to a virtual network of mental health and substance use supports.”

The app is “free” to use, includes “a self-assessment tool and tracker that monitors mood and mental well-being” and connects “seamlessly” to the WTC portal. The Canadian government states that PocketWell is a response to Canadians’ feedback, and part of WTC’s efforts to improve mental health and substance use services.

However, as an app that will record detailed information about user mood and mental well-being, Canadians should be made aware that PocketWell will extract a significant amount of data from users. And as data has now become the most valuable commodity on Earth, this warrants consideration.

92 per cent of Canadians have expressed concern about the protection of their privacy, with 37 per cent stating they are extremely concerned.

Greenspace, a company headquartered in Toronto that also operates in the U.S., partnered with Health Canada to release PocketWell and build the WTC portal, raising concerns about where users’ data will go; how it will be accessed by the company (or any of its affiliates); and whether it could be used to target ads toward users, create “profiles” of people with mental health issues or contribute to future surveillance (governmental or otherwise).

Data privacy is an issue of importance for Canadians. A study commissioned by the Office of the Privacy Commissioner (OPS) found that “92 per cent of Canadians expressed concern about the protection of their privacy, with 37 per cent stating that they were extremely concerned.” The OPC recorded 680 data breaches impacting 28 million Canadians for the year ending on Nov. 1, 2019. Further, it states that “advances in data science make it more difficult to maintain data anonymity and privacy protections as information now can be linked to other datasets and de-anonymized.”

There is established cause for concern around abuses of personal data in Canada. Between October 2019 and February 2020, Toronto Police Services (TPS) used the infamous Clearview AI facial-recognition technology without public knowledge despite earlier public denials . In the early days of the pandemic, the Ontario government took “extraordinary” action to share lists of all COVID-19 patients in the province with police. This resulted in extensive illegal police use of the now-defunct COVID-19 database. The Canadian Constitution Foundation (CCF) found that “police were caught using the COVID-19 database to look up names unrelated to active calls, to do wholesale postal code searches for COVID-19 cases, and to even do broad-based searches outside officers’ own cities.”

PocketWell is not the first app from the federal government in the age of COVID. In July 2020, the federal government released the largely ineffective COVID-19 Alert app. Uptake and impact of this app was minimal, despite the “roughly $21 million spent to develop and promote” it. That this app is still collecting data and in commission is troubling, given that an OPC privacy review identified the need to decommission the app if it is ineffective (it is, and they have not).

PocketWell raises questions around what is actually “freely” being offered by the Canadian government in the context of widespread deprivation, despair, exhaustion, grief and hopelessness driven by COVID-19. PocketWell is an intervention that does nothing to address root causes of mental health concerns and drug use – lack of affordable housing; criminalization of drug use; over-policing; precarious employment; social isolation; lack of accessible therapeutic services; and pervasive racist violence across the country. Though PocketWell can provide referrals, the government has not expanded the availability or affordability of mental health and substance use services, nor substantively addressed structural causes of mental distress.

Further, access and use of smartphones is not ubiquitous, making PocketWell accessible only to people with the means and ability to use smartphone technology. 

It is necessary to consider whether or not PocketWell’s monitoring features could trigger fatal confrontations.

Another concern with PocketWell is its potential to link to police services, health records and other government records without user knowledge. Particularly for Black and Indigenous peoples, safety and confidentiality are a necessity. In 2020, 55 people were shot by police and 34 were killed. In cases in which race was recorded, 48 per cent were Indigenous and 19 per cent were Black. Specifically, while Black Torontonians account for merely 8.8 per cent of the population, a recent study by the Ontario Human Rights Commission (2018) found  that “Black people are 20 times more likely than a White person to be involved in a fatal shooting by the Toronto Police Service.” Because police show up during mental health crisis calls, it is necessary to consider whether or not PocketWell’s monitoring features could trigger fatal confrontations. 

The individualistic focus of PocketWell fails to account for the structural, patterned mental health impacts on populations who experience disproportionate mental health challenges because of sustained material deprivations and systemic violence. Given that people with mental health and substance use challenges are among the most over-surveilled and stigmatized, considerations for safety, privacy and other potential uses of PocketWell’s data are urgent. 

We will not be saved by apps. Technology does not replace the hands-on care and support of community, mental health professionals and loved ones. Further, it is somewhat ironic the Canadian government would introduce an app as a solution to mental health issues two years into a pandemic that has resulted in excessive screen time, which is widely known to be detrimental to child and adult health.

Instead, people of all ages need access to free, confidential, appropriate, dedicated mental health support from practitioners and people with lived experience who are experts in offering meaningful support. Beyond that, the Canadian government must do more to address the root causes of mental health challenges and substance use more generally given the compounding negative impacts of structural oppression, criminalization and injustice.

Though PocketWell is being advertised as “free,” the volume of detailed, sensitive and highly valuable data that the Government of Canada and Greenspace will collect raises the possibility that they may be gaining much more from the app than users themselves.

This article has been updated to reflect the fact that Greenspace is headquartered in Toronto.

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Authors

Idil Abdillahi

Contributor

Idil Abdillahi is an Assistant Professor at the School of Disability Studies, cross-appointed to the School of Social Work at Ryerson University. She is an internationally recognized scholar, researcher and practitioner across the social sciences. She is the author of Black Women Under State: Surveillance, Poverty, & the Violence of Social Assistance (2022), co-author of BlackLife: Post-BLM and The Struggle For Freedom (2019), author of Blackened Madness: Medicalization, and Black Everyday Life in Canada (forthcoming), and a co-editor of the forthcoming edition of Mad Matters: A Critical Reader in Canadian Mad Studies.

Anne Rucchetto

Contributor

Anne Rucchetto is a writer and researcher interested in structural forces of power and oppression, as well as their manifestation across health-care settings. She has been published widely as a journalist and academic.

Madeleine DeWelles

Contibutor

Madeleine (Maddy) DeWelles is a PhD candidate in social justice education at OISE/UT. Her research focus is disability studies and childhood studies. Maddy is passionate about teaching and is a TA at Ryerson University’s Disability Studies program.

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