Methods and Ethics in Public Health e-Research with Vulnerable Populations: Development of a Governance Framework and Ethical Guidelines

Craig Fry, Department of Medicine.

Since the 1990s the popularity of e-Research methods for primary data collection has slowly grown in the field of public health research in Australia. Internet-based survey methods are now commonly used to conduct research with health service professionals, and their application is spreading in epidemiological and surveillance studies of psychostimulant and related drug use (e.g. methamphetamine, cocaine, ecstasy) amongst 14-24 year olds – a population group that routinely uses a range of information and communications technologies. The emergence of e-Research methods in public health research has occurred at a faster pace than the development of accompanying research governance frameworks and ethical guidelines for this field. In public health e-Research there are also key methodological questions around sampling biases and data reliability and validity that have not been fully examined. Public health research focuses on health issues around which there may exist significant stigma, community misunderstanding and potential legal ramifications (e.g. obesity, mental health, sexually transmissible infections, blood-borne viruses, illicit drug use). Funding bodies, ethics committees, the general public, and research participants themselves are increasingly concerned about the risk and/or negative outcomes from participation in such research. A specific governance framework and ethical guidelines are needed in support of methodological innovation in public health, and public health e-Research is a clear case in point.

• Develop research ethics and governance resources to support development and application at Monash University of public health e-Research with vulnerable populations, and
• Establish research to address the methodological questions in public health e-Research around sampling biases and data reliability and validity.

As Monash University continues to develop its public health research and development profile through research methods innovation, there will be a need to understand the related ethical and governance requirements and key methodological challenges to support this work. The application of e-Research in public health has significant potential to enhance the study of health issues with difficult to contact population groups. This project provides an opportunity for leadership in public health e-research – an area of national and international interest and importance.