Patient empowerment and patient-reported outcomes through mHealth in NCDs in Uganda

March 2023 – June 2025

Objective
In this project, we shall develop, implement, and evaluate a mobile health (mHealth) platform for educating patients about cancer and mental illnesses in Uganda, linkage of patients to peer support workers (“expert patients” and survivors), and collecting patient-reported outcomes (e.g. self symptom assessment and quality of life surveys). We shall follow a design science research approach and principles of user-centred design. We shall use familiar and feasible technologies such as SMS, USSD and IVR. The health information content and communication flows shall also be developed and iteratively evaluated with the target users of the system to ensure it is contextually appropriate and correctly translated. Evaluation of the project will be qualitative and quantitative, including assessment of usability, fidelity, and the clinical impact, such as the impact of the intervention on patient self-efficacy, loss to follow-up, quality of life, and satisfaction with care.

Background
The health and economic development challenges of infectious diseases in Africa and other LMICs are well recognized. Controlling these infectious diseases (especially HIV/AIDS, Malaria and Tuberculosis) in Africa has thus been the priority for many national and global players, such as the US CDC and PEPFAR, the Bill and Melinda Gates Foundation, and the Global Fund. Consequently, significant progress has been made in the past decades in controlling infectious diseases in Africa. In contrast, non-communicable diseases (NCDs) such as cancer and mental illnesses have remained under-prioritized.

Today, cancer kills approximately 10 million people per year globally. This is more than deaths from HIV/AIDS, Malaria, Tuberculosis, and COVID-19 combined. In Africa, the ongoing socio-economic transitions (urbanization, ageing population, and westernization of lifestyles) are escalating the cancer burden (incidence predicted to rise 38% over the next decade) faster than in any other part of the world. Similarly, approximately one out of every four persons globally has a mental disorder, leading to over 8 million deaths and about 2.5 trillion US dollars lost in the loss of productivity. In Africa, 85% of people with mental illnesses do not have access to the necessary healthcare. Disruptions in healthcare, e.g. due to COVID-19, as well as social inequalities and marginalization, further exacerbate the problem.

Mobile phones are ubiquitous in Africa and have allowed leapfrogging of technological limitations. Mobile solutions are accelerating finance (mobile money), the energy sector (pay-as-you-go solar mobile solutions), and agriculture (access to market prices, micro-insurance), among others. Mobile technologies in healthcare (mHealth) are also gaining traction in Africa with a demonstrated positive impact on patient treatment adherence, provision of health education and awareness to the general public, data collection and reporting, drug supply chain and stock management, and disease surveillance. However, most implementations have been isolated pilots, focused on infectious diseases, and lacked robust evaluation methods. Most evaluations have focused on feasibility, usability and acceptability, with limited focus and evidence on clinical outcomes.

About the Digital Futures Postdoc Fellow
Johnblack K. Kabukye is a medical doctor and health informatics specialist at the Uganda Cancer Institute in Kampala, Uganda. He did a Bachelor of Medicine and a Bachelor of Surgery from Makerere University, a Master of Science in Health informatics from Karolinska Institute and Stockholm University, and a PhD in medical informatics from the University of Amsterdam. His research interests are designing, implementing and evaluating digital health solutions for healthcare providers and patients in developing countries, including electronic medical records, patient advice telephone lines, and telehealth and artificial intelligence-enabled apps to support cervical cancer screening.

Main supervisor
John Owuor, PhD, Director, SPIDER Department of Computer and Systems Sciences (DSV) Stockholm University

Co-supervisor
Susanne Nilsson, Researcher, Integrated product development and design, Machine design, School of Industrial Engineering and Management, KTH

Watch the recorded presentation at the Digitalize in Stockholm 2023 event: