Ethical challenges in designing and implementing health systems research: Experiences from the field
Hyder A.A. and Krubiner C. (2016) Ethical challenges in designing and implementing health systems research: Experiences from the field, AJOB Empirical Bioethics Vol. 7 , Iss. 3
Health systems research seeks to generate knowledge to improve the mechanisms for delivering quality health services and improving population health outcomes. It covers a wide range of research questions, including health financing, service delivery, human resources for health, and quality improvement. Because health systems research has its own definitions, methods, and analytic approaches, there is an increasing realization that these studies may raise ethical concerns that differ from other types of research. Despite the increasing interest and investment in health systems research over the past several years, there is little empirical research examining the kinds of ethical challenges that arise in the design and implementation of these studies. A deeper understanding of the kinds of ethical issues encountered in various types of health systems research could help researchers prepare for these challenges and better inform ethical review processes. Using semi-structured qualitative interviews with 16 researchers involved in the Future Health Systems Consortium and Johns Hopkins–Fogarty African Bioethics Consortium, the authors conducted an exploratory study to identify some common or poignant ethical challenges in health systems research. Thematic analysis of interview transcripts using an inductive approach revealed ethics issues in health systems research surrounding the following topics: privacy and confidentiality, associated harms, appropriate consent, institutional review board (IRB) review, appropriate controls, research ownership and control, responsiveness, post-trial issues, sustainability, and collaboration and competition. Though not exhaustive, this preliminary account highlights the nuanced and unique ethical challenges that can arise in health systems research and underscores the need for different kinds of ethical guidance and oversight for health systems research studies.