A matter of life and death: practical and ethical constraints in the development of a mobile verbal autopsy tool

Authors:
Jon Bird;Peter Byass;Kathleen Kahn;Paul Mee;Edward Fottrell
Affiliations:
University College London, London, United Kingdom;University of the Witwatersrand, INDEPTH Network & Umeå University, Umeå, Sweden;Umeå University & INDEPTH Network & University of the Witwatersrand, Johannesburg, South Africa;Umeå University & INDEPTH Network & University of the Witwatersrand, Joh, South Africa;Umeå University & University College London, London, United Kingdom
Venue:
Proceedings of the SIGCHI Conference on Human Factors in Computing Systems
Year:
2013

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Abstract

Verbal autopsy (VA) involves interviewing relatives of the deceased to identify the probable cause of death and is typically used in settings where there is no official system for recording deaths or their causes. Following the interview, physician assessment to determine probable cause can take several years to complete. The World Health Organization (WHO) recognizes that there is a pressing need for a mobile device that combines direct data capture and analysis if this technique is to become part of routine health surveillance. We conducted a field test in rural South Africa to evaluate a mobile system that we designed to meet WHO requirements (namely, simplicity, feasibility, adaptability to local contexts, cost-effectiveness and program relevance). If desired, this system can provide immediate feedback to respondents about the probable cause of death at the end of a VA interview. We assessed the ethical implications of this technological development by interviewing all the stakeholders in the VA process (respondents, fieldworkers, physicians, population scientists, data managers and community engagement managers) and highlight the issues that this community needs to debate and resolve.