It Is Becoming Much Harder to Access Mental Health Support Anonymously
The COVID-19 pandemic isn’t just a physical health crisis—it’s also a mental one. But online resources for mental health come with privacy risks.
By Piers Gooding –
This article is part of Privacy in the Pandemic, a Future Tense series.
The COVID-19 pandemic isn’t just a physical health crisis—it’s also a mental one. Millions of people face the prospect of infection and death, as well as job losses, social isolation, and a fracturing of community life on a massive scale.
Mental health data is incredibly personal, and much of the current internet ecosystem is designed to vacuum it up and monetize it. If you browse an addiction support website, could your browser history be used against you? And if a doctor prescribes you with a mental health app, who could access the data it generates? These are valid questions that have been percolating among the experts who design and research these systems, as well as mental health activists and service user advocates. Now, as the tech is suddenly scaling up, is the ideal time to ensure the apps and platforms are designed with the highest ethical standards, and in ways that respect users’ digital rights.
Mental health data and the internet already have a troubled history. Unprecedented volumes of sensitive personal information exist today, flowing through a digital ecosystem with little oversight or restrictions. This dilution of individual privacy did not emerge through broad social consensus. Instead, it arrived suddenly with the expansion of a vast and lucrative trade in human tracking. For mental health and addiction services, these developments have serious—and rarely discussed—side effects.
Apps have also raised concerns about data misuse.
Online mental health resources may still actually support anonymous help-seeking. Confidential access to trustworthy online resources may be particularly useful for people whose biggest privacy concern is within their own home or community. Examples could include victims of family violence, LGBTQ young people, or even individuals in tightknit, rural, or religious communities. But despite these opportunities, for most people, our lives—both online and off—are being drawn into an opaque set of algorithmically determined and (often) profit-driven data flows.
These developments spotlight the need for proponents and users of digital mental health care to remain vigilant amid the growing surveillance economy. From “digital pills” to “machine counsellors,” there is an expanding array of digital efforts to address mental distress. While there are enormous opportunities, there are also serious risks—and these risks need to be openly addressed.
First, mental health websites or apps must stop treating the personal data of their users as a commodity. Websites dealing with such sensitive topics should not be tracking their users for marketing purposes. Where needed, data protection and privacy laws should prohibit the commodification of sensitive user data concerning mental health and improve data governance standards. Strengthening nondiscrimination rules, in areas like insurance and migration, can also prevent harms caused by leaked, stolen, or traded mental health data. Efforts must also be taken to actively involve those most affected in the development of online tools to alleviate people’s distress—such as mental health service users and their representative organizations.
Although the burden should fall on websites and app developers to manage data responsibly, individuals can take several precautions when seeking support. These include: blocking third-party cookies on your browsers, using ad-blockers and anti-tracking add-ons, and checking to see if a particular mental health app or website is trustworthy.
When help-seeking is leveraged against a person’s interest, people will be less likely to seek help. For better or worse, the COVID-19 crisis is pushing more of our lives online. Now is the time to ensure people can access online support safely and discreetly. Efforts to promote innovation in digital mental health must feed into broader efforts to create an open and transparent internet. This is in the interest of people experiencing distress, as well as the professionals who assist them, and the general public who benefit from a basic guarantee of social security.