An Analysis of Privacy Language in the Scholarly Literature on Mental Health Apps

An Analysis of Privacy Language in the Scholarly Literature on Mental Health Apps

Maureen Ebben (University of Southern Maine, USA) and Julien S. Murphy (University of Southern Maine, USA)
DOI: 10.4018/978-1-7998-3487-8.ch009

Abstract

This chapter charts the language of privacy in published scholarship on mental health apps. What definition of privacy is assumed? What meanings of privacy are deployed in the research about mental health apps? Using a qualitative thematic approach, this analysis shows that privacy language can be understood as occurring in three phases: Phase 1: Discourse of Technological Possibility; Phase 2: Discourse of Privacy Challenges and Threats; and Phase 3: Discourse of Advocacy. The authors discuss each of these phases and propose a more critical discourse of privacy by identifying the issues inherent in understanding privacy as security.
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Introduction

Since the founding of Apple’s App Store in 2008, apps for iOS and Android phones have become a burgeoning industry. Comprising the largest and fastest-growing segment of digital therapeutics, there are over 325,000 health apps with an annual growth rate of 25% (Wykes & Schueller, 2019). In this chapter, we focus exclusively on apps designed for mental health to illuminate the privacy issues at stake. Globally, nearly 30% of the population will experience a mental health condition in their lifetime, and in the U.S., an estimated forty-five million adults live with mental illness (Henson, Wisniewski, Hollis, Deshavan, & Torous, 2019). As a key area of the apps economy, there are over 10,000 mental health apps available for use in psychiatry, psychology, counseling, mental health services, and self-care (Torous et al., 2018).

Mental health apps leverage the immediacy and accessibility of mobile devices using cognitive behavior therapy (CBT) tools, games, meditation, relaxation, mood and symptom tracking, hypnosis, crisis management strategies, real-time on-demand talk with licensed therapists and even chatbots to cope with a range of conditions including mild to acute stress and anxiety, suicide prevention, sobriety assessment, addiction, bipolar disorder, obsessive-compulsive disorder, and schizophrenia (Huguet et al., 2016; Radovic et al., 2016; Stawarz, Preist, Tallon, Wiles, & Coyle, 2018). While curated app libraries exist, most consumers select mental health apps through their own searches (Larsen et al., 2019).

Estimates about the number of users are difficult to pin down. Figures based on the total combined Apple App Store (iOS) and Google Play (Android) global downloads provide some perspective. Mental health apps, Headspace (mindfulness) and Calm (for sleep and anxiety), top the list of global downloads with 26 million and 25 million downloads, respectively. Active users, on both a daily and monthly basis, comprise a fraction of these figures. Headspace has about 1 million active users monthly and 231,000 active users daily. Similarly, Calm has about 1 million active users monthly and 237,000 active users daily (Carlo, Ghomi, Renn, & Areán, 2019). Given that there are over 10,000 mental health apps, the numbers of persons engaged with these apps are significant.

Initially, popular discourse referred to mental health apps as the “pocket therapist” (Trudeau, 2010), describing the early work of Margaret Morris’s team at Intel Digital Health Group that created the app, Mobile Therapy to track moods, energy, sleep, and diet by users moving a red dot on their phone screen (Morris et al., 2010). While it once would have been science fiction to describe a society in which people carry devices for regulating moods and curbing anxiety, today, these are ubiquitous in work and everyday life. College students use apps like Headspace, Anxiety Coach, or Optimism, among thousands of other apps including those designed by students to help with stress or interrupt negative thought patterns. First Responders use CrewCare for social support and stress management. Baristas at over 30,000 Starbucks globally, have free subscriptions to Headspace in their benefits package, and insurance companies, such as Cigna, offer Happify Health to covered employees.

The booming mental health app market has also led to blogs and news sites that rank the popularity of apps annually. In 2019, the website PSYCOM lists the app notOK as the most widely used app for adolescent suicide prevention. It features a digital panic button that generates a text message, “Hey, I’m not OK! Please call, text, or come find me,” from the user's GPS location and sent to up to five contacts.

Key Terms in this Chapter

Autonomy: The right to self-governance and independence of thought. Freedom to choose for oneself and chart one’s future.

General Data Privacy and Regulation (GDPR): Legislation enacted by the European Union in 2018 regulating companies in order to protect the handling of personal information of European Union (E.U.) citizens.

Ecosystem: This term which strictly refers to relationships between biological organisms in the environment has been broadened to refer to the environment created by relationships between humans and information systems.

Encryption: A coding system that protects information by translating it into a second language or set of symbols to keep it secret. This process is typically automated by algorithms.

Digital Health: The array of wearable and mobile technologies used to provide health care formally or informally. This includes telemedicine, digital medical records, and health apps.

Psychiatric Surveillance: The observation and monitoring of patients’ mental health for prognostic purposes and treatment.

Health Insurance Portability and Accountability Act (HIPPA): 1996 U.S. federal law protecting the digital transmission by health care companies of patient medical information.

Data Provenance: The records of the origin and ownership of information including the movement of information between databases.

Confidentiality: The condition of information held in private, outside of the public view. A central value in medicine and law in regard to patient medical information and in information technology regarding control over one’s data.

Professional Ethics: Moral guidelines for professional behavior that protect the integrity of the profession. Professional ethics codes have been established for healthcare, law, accounting, and information technology among other fields.

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