An empirical analysis of ethical problems for longitudinal cohorts focused on multimorbidity in sub-Saharan Africa

Background

There is an urgent need to establish longitudinal cohorts in sub-Saharan Africa to examine the growing burden of multimorbidity. Multimorbidity is the cooccurrence of two or more chronic conditions. Often in low-income settings, multimorbidity is the intermixing of infectious and non-communicable diseases in the same individual. In low-income countries, an estimated 33% of individuals presenting to clinics have multimorbidities. It has been shown that as individuals age, multimorbidity becomes more common. However, the type and number of multimorbidities most prevalent in sub-Saharan Africa are poorly understood. Longitudinal studies can aid in assessing how multimorbidity develops, in whom it develops, and the changes that occur over the lifespan of a person.

Several challenges exist to establishing longitudinal cohorts in sub-Saharan Africa for studying multimorbidity, especially in rural contexts. There may be limited health system capacity, socioeconomic differences in health system usage, limited electronic health records, and the need for active follow-up of participants. Importantly, key ethical considerations in the setup of longitudinal cohorts for multimorbidity are poorly understood.

•  Who is ultimately responsible for the burden of care?
•  What constitutes an incidental finding with respect to multimorbidity?
•  How can communities be best engaged in the study and feedback of results?
•  What are good practices for participant referrals from studies to health systems?

RESEARCH EXPERIENCE, RESEARCH METHODS AND TRAINING

Ethics approvals have been obtained. It is expected that the DPhil candidate will collect the data in Uganda using, for example, structured workshops, focus groups, and key informant interviews. This ethics project will be embedded in an ongoing study of risk factors for schistosomiasis in rural villages in Uganda. Schistosomiasis is a set of debilitating, chronic conditions that cooccur within the same individual. The conditions associated with schistosomiasis, including anaemia, liver pathologies, malnutrition, enlarged liver/spleen, and gastrointestinal inflammation have many complex causes. With several chronic conditions of complex aetiologies, schistosomiasis provides an ideal starting point for understanding issues relevant to establishing cohorts associated with multimorbidity. After focusing on schistosomiasis, the DPhil candidate is expected to assess how cohorts can evolve from focusing on single infections/diseases to multiple, broad causes of ill health in sub-Saharan Africa. Health and Demographic Surveillance Systems have naturally progressed from focusing on single infections/diseases to a broad range of causes resulting in ill health.

The study topics for this project include conceptually and empirically addressing issues related to the burden of care, incidental findings, community engagement, and health system referrals in the context of establishing cohorts for multimorbidity studies in sub-Saharan Africa.

Aims:

• Conduct a systematic review on cohort studies in sub-Saharan Africa and identify how each have addressed the study topics.
• Design studies, and complete community engagement exercises and interviews (which may include audio) to collect data informing how best to establish a cohort for multimorbidity related to the study topics.
• Complete an empirical analysis of data collected to identify key themes presented by study communities.
• Establish a conceptual framework of specific issues to consider for cohorts focused on multimorbidity.

The student will gain skills in literature review, study design, primary data collection, and research presentation. Training in epidemiology and ethics will be provided.

FIELD WORK, SECONDMENTS, INDUSTRY PLACEMENTS AND TRAINING

This project requires approximately 1-2 months of fieldwork in rural Uganda over the course of the DPhil project. The study is in close collaboration with the Uganda Ministry of Health. Experienced field teams from Uganda will co-lead the primary data collection.

PROSPECTIVE STUDENT

Candidates ideally will have postgraduate training in global health, epidemiology, medicine, ethics, social sciences or a related discipline as well as a strong interest in global health ethics.