Collecting health data through health apps has increased dramatically in recent years. Health apps have been promoted as offering huge advances in the health of people in the global south, but they also pose risks to privacy and ultimately to health outcomes. The recent COVID-19 crisis has clearly articulated some of the benefits and the risk of health apps.
Funded by the Wellcome Trust, this interdisciplinary project led by Prof Sharifah Sekalala, Prof Pamela Andanda, and Prof Bitange Ndemo seeks to analyse the regulation of health apps in Uganda, Kenya and South Africa. The project team will evaluate the data protection regimes and engage with key stakeholders in these countries to establish the extent to which they protect their citizens’ health data, especially in cross-border mHealth activities.
While public health research projects often involve both ethical oversight and approval including clear plans about data usage and storage and transfer in compliance with national legislation, this new breed of health apps is regulated primarily through domestic digital data protection laws. South Africa was an early adopter and established the Protection of Personal Information Act 2013. In 2019, both Kenya and Uganda adopted data protection acts which were modelled along the European GDPR. In all three countries, full implementation has been slow, and there are fears that privacy concerns have not been sufficiently addressed and that health apps are being designed to continuously evolve beyond the remit of this legislation and ignoring broader human rights concerns. Focusing on law, bioethics, entrepreneurship, epidemiology and policy makers, the project aims to bring together a range of stakeholders to empirically investigate how health apps are operating in practice, whether new forms of regulation are adequate in responding to potential problems, how different stakeholders perceive the regulatory framework and how we can create better regulatory frameworks.
Research QuestionsThis project lies at the crossroads of socio-legal studies and the medical humanities and relies on an interdisciplinary team of scholars from the UK, South Africa and Kenya, to ask:
What are the benefits and problems of different types of health apps? What kind of data do these apps require users to provide and how do app users and developers perceive the use and migration of data? What regulatory structures exist to govern transnational health data? If there is indeed no overarching regulatory structure governing transnational health data transfer—or, ‘data migration’—how effective are existing individual country data protection laws in addressing health app data? Given the temporal dimensions (i.e. app technological changes are very rapid) of regulating health apps, how can we enable Sub-Saharan countries to effectively and equitably regulate health data?
Consortium partners illustration click hereLink opens in a new window
Human Rights Impact of Research
The right to privacy is increasingly importantLink opens in a new window.in the modern data-centric world. The project team will work closely with civil society and other stakeholders in Kenya, Uganda and South Africa to enable them to understand and advance the rights to privacy in Sub-Saharan Africa. The project aims to have a broad human rights impact around health data governance in the following ways:
- While some national and regional legislative mechanisms for data protection and governance exist, the Health Data Governance PrinciplesLink opens in a new window (HDGP) are the first global set of human rights-based principles that respond to the increase of health data-driven approaches. The project will include a longitudinal study in partnership with Transform Health CoalitionLink opens in a new window who have led on the development of the HDGP which will assess how these new global principles are implemented by stakeholders who are responsible for the collection and management of health data (including governments, civil society actors, international organisations and the private sector).
- While health apps can be beneficial, they are often developed under a guise of altruism, and with scant data protection laws in Africa leaving users open to data exploitation by Western tech companiesLink opens in a new window, users’ rights to data privacy are directly engaged and at risk. A framework of Digital Colonialism, which relates to ‘the deployment of imperial powerLink opens in a new window in the form of new rules, designs, languages, cultures and belief systems serving the interests of the dominant power’ will be used to structure our analysis of proposed regulatory solutions to ensure they address inherently oppressive health data extracting practices.
- An incubator for app developers to trial designs under the different proposed regulatory solutions in order to discover their feasibility will be set up.
- We aim to develop legal guidelines for health data regulation that promote and protect the right to data privacy, and which have a broader public impact on regulations.
The researchers intend to achieve sustainable human rights impact for future generations beyond the project through working with our stakeholders to promote new regulations at the national and regional level. We will train and empower the next generation of data activists to lobby for digital rights and create awareness through a digital rights programme.