Dr Adnan Hyder shares his reflections from a workshop exploring the ethics of priority setting for health research in Oxford, UK, hosted by the Ethox Centre at Oxford University with the Future Health Systems consortium and the Ethics Thematic Working Group of Health Systems Global.
How do research funders decide what types of research to fund? And how do they account for the ethical implications of their choice? Or do they not care? These questions have been racking my brains for over decade. In the late 1990s and early 2000’s I participated in the development of a number of research priority setting approaches for health research – using criteria such as burden of disease and potential cost effectiveness – but never thought beyond the technical frame of issues. And yet in recent years these same criteria appeared to become more complex for me – I became more uncomfortable with them and with the fact that many donors appeared either not to have specific processes for research investment decision, or were not transparent about them.
These questions became more apparent recently as my post doc colleague – Dr Bridget Pratt – and I started to explore the ethics of health systems research. We realised that while others had questioned research priority setting methods, few had discussed their moral implications – and thus the ethics of priority setting remained unexplored. We have decided to help start filling this conceptual and empirical gap in research ethics and health systems decision sciences. We started by reviewing existing work on this topic and published a paper showing the dearth of literature and the key issues identified thus far as ethical concerns in priority setting for research. These include the lack of explicit criteria, the influence of global decisions, the lack of power within developing countries, and the general lack of funds for relevant national health research.
Over 20 health professionals, ethicists, philosophers, health systems specialists, researchers, and development experts gathered in Oxford on 30th September 2015 to explore the ethics of priority setting for health research. While we expected this one-day event to be quite contentious, it turned out to be an amazing opportunity to see how different disciplines and experiences handled the idea of priority setting for research. While the day started with lots of questions around definitions of research, and type of priority setting, it ended with a few concepts being endorsed by all.
One of these highly supported concepts was the notion that an over-riding ethical concept for setting priorities ought to be to eventually help the worst off in the country or region. This concern for addressing inequities was appeared to resonate with all present and could prove to be important in assessing research investment choices; research that hopes to help the cause of social justice would thus be given higher priority over other research that would not necessarily do so. Moreover, it was also appreciated that this principle relates closely to other criteria such as relevance and social value of research. We hope to capture these discussions in a paper and also work to further refine our thinking on this issue and organize more workshops in the future.
For now, research funders beware – we want to know how you decide your priorities and why?