Author: Barbara Otieno
Over the two days of February 1st and 2nd 2023, University of Warwick brought together project members for the inception of the NoAppForThis Project whose implementation spans across three countries, namely, Kenya, Uganda, and South Africa. The workshop was organized by University of Warwick and hosted at Arziki Chiromo Conference Centre at University of Nairobi. The meeting combined presentations by different project members with structured discussion sessions on key project related themes within the African context.
A total of 18 people were in attendance, including the Kenyan Ambassador to Belgium & European Union, Prof. Bitange Ndemo, who joined the session virtually, Chair of Department of Business Administration at the Faculty of Business and Management Sciences at University of Nairobi, Dr. Florence Muindi, Dean at the Faculty of Business and Management Sciences at University of Nairobi, Prof. Jackson Maalu, Prof. Sharifah Sekelela of University of Warwick, Prof. Pamela Andanda of University of Witwatersrand, Dr. Ben Mkalama of University of Nairobi, as well as representatives from project partners from Open Institute, Center for Health, Human Rights and Development (CEHURD) and The Collaboration on International ICT Policy for East and Southern Africa (CIPESA) among others.
Image: Participants at the 2 day workshop held at the University of Nairobi, on 1st and 2nd February 2023
The two-day workshop comprised of plenary sessions, keynote presentations, and project presentations. The workshop was structured to foster discussion between project partners around the core work packages of the project and this was achieved through the Q&A sessions after each presentation, group discussions, and a panel discussion.
Digital health apps and innovation
Prof. Bitange Ndemo of University of Nairobi, and Kenyan Ambassador to Belgium & European Union led this session where he gave a brief overview of the current state of digital health in Africa. He talked about ongoing legacies of colonialism within global health, and the conceptualization of ‘digital colonialism’ which has resulted from colonialism of digital tools. He spoke of the critical need to examine digital tools specifically within health sector and the emerging issue of health data migration. Dr. Ben Mkalama also spoke about digital health solutions on the African continent. In his presentation, he spoke of how Covid-19 pandemic accelerated the growth and uptake of digital appliances and tools across different sectors which led to both demand and supply driven growth of digitalisation. He also pointed out how healthcare has been slow in embracing digital disruption and transformation, but there is an emerging trend in the developing world where digital solutions are actively sought in healthcare systems.
In his presentation, he also mentioned the rise in internet connectivity which has seen African governments turn to digital health services to handle a shortage of health workers and to better connect rural communities. He also highlighted that health data is obtained at different levels of practice, and digital devices are increasingly being used for a widening range of functions from diagnostics to health insurance to treatment advice. Some key observations made on health applications show that most technological tools and devices are imported mostly from the developed world, the value of data is often commensurate with how personal the data is, and digital devices are continually collecting, analysing, and storing comprehensive data that gives detailed accounts of an individual’s phenotypes, physical actions, social activity, and mental state.
Health data migration in Africa and ethical-legal concerns
Prof. Pamela Andanda’s keynote address looked at current trends in the migration of health data in Africa, ethical and legal concerns of cross-border health migration of health data, gaps in the current regulations, and possible solutions to the issues. In her presentation, she highlighted the consequences resulting from not having clear regulatory standards in place to address challenges relating to the use of health applications. These include poor quality applications, breach of data privacy, and lack of interoperability which make it difficult to integrate apps into the health system.
On the legal perspective, the issues highlighted in her presentation include privacy concerns, and complex levels of control and ‘data ownership’ by myriads of stakeholders in the evolving landscape of health apps. On the other hand, the ethical issues highlighted were on the lack of ethical models to govern access to data, resolve issues of privacy, as well as the lack of standards to inform a continental position for advocacy with stakeholders. In light of this, her presentation pointed out the issues the project will take a closer look at existing regulatory frameworks governing transnational health data transfer, and how effective existing individual countries’ laws are in regulating health data collected passively through apps. She also presented on existing gaps that have so far been identified in the project in the three case study countries. Currently, there are no regulatory standards to assess the existence of legal/regulatory equivalence in third party countries, cloud storage of passively collected data through health apps is hardly regulated, and lastly, responsibility for data security or safeguarding data subjects’ rights remains unclear.
Priority issues in the governance and regulation of health data in Africa
The keynote address on the priority issues in health data governance and regulation in Africa was given by Dr Wairagala Wakabi, the Executive Director of CIPESA. He gave an overview of the current state of data protection in Africa. He further highlighted sectoral policies and regulations in the fin-tech space and reason how data protection will help address issues such as collection and sharing of consumer data to address and misuse of data. He likened this in the health sector where lack of data protection laws where health data is profoundly sensitive, can easily be manipulated and abused, with significant harm being done to data subjects.
In his presentation, he also looked at the need for regulation to address new and emerging issues that affect data rights such as biometrics, big data, artificial intelligence, and video surveillance. On the ongoing conversation about localisation of data, Dr. Wairagala Wakabi, revealed that rather than institute bans on the cross-border transfer of data, most African countries have instituted conditions under which certain types of data may be exported or processed abroad. However, he noted that regional instruments such as the Malabo Convention, the AU Data Policy Framework, and the ACHPR Declaration – as well as the GDPR will continue to offer inspiration to countries in their data protection laws and policies and could help towards greater policy harmonisation. In addition to the regional instruments, he also spoke of the need for transparent and independent Data Protection Impact Assessments (DPIAs) to hold data collectors, private and public, more accountable, to effect data protection laws in instances where they have not been implemented, and help ensure strong, empowered Regulators that are well-resourced, and are composed of independent commissioners, fully staffed.
This workshop highlighted the need to adopt a pan-African approach to regulate cross-border migration of health data in Africa. It emphasized the pressing need for improved policies and regulations that effectively limit data reuse and storage, while also emphasizing the ethical responsibilities of both States and corporations in safeguarding health data. Moving forward, these themes will undoubtedly shape the future of data governance and healthcare systems across the continent.