Webinar: The ethics of health systems research
In this film members of the Thematic Working Group in Health Systems Research reflect on some of the potentially distinct and unique challenges that are faced by health systems researchers. For example:
- There are a variety of methods and measures in health systems research – it is a diverse field. These research ‘interventions’ need to be clearly defined if we are to properly understand the ethical issues that they raise. They need to be based on good science, an understanding of the safety issues raised by previous work, the potential benefits of the intervention and the availability of the benefits of the intervention during and after research.
- In health systems research, many of the research subjects may not in themselves be humans, for example they might be hospitals or clinics. However, such institutions and systems are made up of individuals and groups, who also interact with others. This may bring up issues related to the definition and moral status of ‘communities’ – including the power dynamics within them and who speaks for whom.
- The unit of intervention versus the data that is collected. There may be multiple research subjects operating at a range of levels, with implications for informed consent processes, risk, and benefits.
- Informed consent is often necessary for individuals, but there are different types of group consent that are important to discuss in health systems research. This raises issues of legitimacy, representation, and coverage.
- Appropriate comparison and control groups may be more difficult to establish compared to some other types of health research. Health systems research often involves interventions that take place within existing, real world settings, which means many (especially low-cost) health systems research studies use comparators of convenience rather than placebo controls. The challenges of imperfect comparison groups will have implications for the future applicability of the study findings and their social value.
- As with all research, there is a need to ensure health policy and system research designs minimise risks and disadvantages and maximise benefits. Benefits beyond the individual include capacity development and benefits to the whole health system.