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Projects
Privacy in Mobile Health
We study how users perceive privacy regulations and protections and how developers implement those protections in mobile health apps.
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Understanding users, supporting developers, and informing regulators about privacy in mobile health apps
Many people use mobile health apps, but do they know how well their data is protected in those apps? This project, titled “Narrowing The Gap Between Privacy Expectations and Reality in Mobile Health,” aims to identify key gaps and propose solutions to improve how health apps protect user privacy and communicate to users those protections.
The Problem
Recent years have seen a dramatic rise in mobile apps for health monitoring. These apps have the potential to revolutionize how people stay on top of their health and interact with doctors, but gaps in privacy protections, whether perceived or real, can scare away potential users and undermine the impact of mobile health apps.
How We’re Addressing It
We are systematically examining the disconnects between what consumers expect, how developers behave, what the law says, and the actual data handling practices of mobile health apps. Ultimately, our goal is to better align the practices of mobile health apps with the privacy expectations of consumers.
Our mixed-methods approach combines expertise in social sciences, computer security and privacy, natural language processing, and law. The project has several components, including:
- Surveys to understand users’ expectations and preferences around privacy in mobile health apps.
- Analysis of online forum posts to understand app developers’ perspectives and challenges regarding user privacy.
- Interviews with legal professionals to understand challenges related to introducing new regulatory requirements and maintaining regulatory compliance.
- Technical analysis of mobile health apps’ data practices, paired with analysis of privacy policies.
- Engagement of stakeholders from industry, academia, and regulatory bodies to propose solutions to bridge the gaps.
The outcomes of our work will include policy recommendations, reports about users’ misconceptions and preferences regarding privacy protections, practical solutions for monitoring data practices and enforcing privacy regulations, and advice for developers on considering privacy while designing software.
Project Team
Associated ICSI Group
ICSI Research Team
Alisa Frik
View BioAlisa Frik, PhD, is a Research Affiliate at ICSI and Co-founder of PrivacyRescue, a user experience research consulting collective.
Julia Bernd
View BioJulia Bernd is a Research Scientist at ICSI, where her research focuses on digital privacy, user expectations, and social impacts of technology.
External Collaborators
Noura Abdi
Liverpool Hope University
Ruba Abu-Salma
Kings College London
Pragyan K C
University of Texas San Antonio
Ina Kaleva
Kings College London
Lisa Malki
University College London
Alex Thomas
University of California, Berkeley
Mark Warner
University College London
Alumni/Previous Contributors
- Primal Wijesekera
- Serge Egelman
- Michael Tschantz
- Mobin Javed
- Priyasha Chatterjee
- Mujeeb Adelekan
- Shubham Banavalikar
- Anniyat Karymsak
- Christopher Loewenthal
- Subham Mitra
- Liam Webster
- Bhadra Mishra
- Kenneth Thilakarathna
- Nicole Martinez-Martin
- Sachintha Pitigala
- Mohammad Tahaei
- Mohsin Khan
- Jayantha Fernando
Outcomes
Publications
- Alisa Frik, Subham Mitra, Priyasha Chatterjee, Julia Bernd. Are Bite-Size Data Safety Details a Healthy Diet for Android Telehealth App Users? Impacts of Privacy Nutrition Labels on Users’ Privacy Perceptions. To appear in Proceedings on Privacy Enhancing Technologies (PoPETs) 2026:1, 2026.
- Ina Kaleva, Alisa Frik, Lisa Malki, Mark Warner, Ruba Abu-Salma. “I don’t think it needs to be political”: Privacy Experiences and Concerns of FemHealth App Users in the United States. To appear in Proceedings on Privacy-Enhancing Technologies (PoPETs) 2026:2, 2026.
- Primal Wijesekera. Demystifying the android telehealth ecosystem. Presentation at the USENIX Conference on Privacy Engineering Practice and Respect, Santa Clara, USA, June 9–10, 2025.
- Liam Webster, Mohsin Khan, Anniyat Karymsak, Nicole Martinez-Martin, Primal Wijesekera. Understanding your health data, apps, & US regulations – demystifying the Android telehealth ecosystem. Presented at the ACM Symposium on Computer Science and Law, Munich, Germany, March 25–27, 2025.
- Kenneth Thilakarathna, Sachintha Pitigala, Jayantha Fernando, Primal Wijesekera. Empirical analysis of Sri Lankan mobile health ecosystem: A precursor to an effective stakeholder engagement. In Workshop on Privacy, Safety, and Trust in Mobile Health Apps, at the Privacy Enhancing Technologies Symposium (PETS), 2024.
- Primal Wijesekera. Health compliance through a transparent supply chain. Presented at the 8th Workshop on Technology and Consumer Protection (ConPro ‘24), 2024.
- Ruba Abu-Salma, Amid Ayobi, Julia Bernd, Fatima Boujarwah, Lee C4, Alisa Frik, Majid Hatamian, Ina Kaleva, Lisa Malki, Dilisha Patel, Corina Sas, Pushpendra Singh, Mohammad Tahaei, Mark Warner, Primal Wijesekera. Privacy, safety, and trust in mobile health apps. Workshop at the Privacy Enhancing Technologies Symposium (PETS ’24), Bristol, UK, July 15, 2024.
- Primal Wijesekera, Kerry O’Brien, Alisa Frik, Mohsin Khan. Panel: The Future of the Privacy Landscape for Mobile Health Apps. The USENIX Conference on Privacy Engineering Practice and Respect (PEPR ’23), Santa Clara, CA, USA, September 11-12, 2023.
- Alexander Thomas, Noura Abdi, Julia Bernd. Privacy Perceptions About Health and Non-Health Mobile Apps. Poster presented at the Nineteenth Symposium on Usable Privacy and Security (SOUPS), Anaheim, CA, USA, August 6-8, 2023.
- Mohammad Tahaei, Julia Bernd, Awais Rashid. Privacy, Permissions, and the Health App Ecosystem: A Stack Overflow Exploration. In Proceedings of the 2022 European Symposium on Usable Security (EuroUSEC), 2022.
About
Focus Areas
- Text Analytics: Sentiment Analysis, Summarization, Topic Modeling
- Operating Systems, Cloud Platforms, and Distributed Computing
- Computer Networks, Internet Protocols, and Web Infrastructure
- Usable Security and Privacy by Design
- Human–Computer Interaction (HCI) and Interaction Design
- User Experience (UX), Usability, and Interface Design
- Technology Policy, Standards, and Global Governance
Get in touch
Want to discuss opportunities to work with ICSI? We’d love to hear from you.