Dr Chase Schultz-Swarthfigure1, Professor Anne-Marie Kelly1, Associate Professor Deborah Zion2
1Western Health, Melbourne, Australia, 2Victoria University, Melbourne, Footscray, Australia
Background: Health research often uses personal health information (PHI). Conditions under which PHI can be used for the secondary purpose of research are set out in in state, national and international law. Consent is required or the relevant conditions for a waiver of consent must be met, as adjudged by a human research ethics committee(HREC).
Issue: Consent for use of PHI for research is rarely sought at an ED presentation. Research often occurs some time after the index visit. Gaining consent can be impractical and runs the risk of distressing patients. Therefore, waiver of consent provisions are frequently used. There is limited information regarding ED patients’ knowledge, attitudes and preferences about use of PHI for research or whether waiver of consent is acceptable to them.
Research: An online, anonymous survey of 103 patients attending two large Melbourne ED aimed to identify ED patients’ knowledge and attitudes towards the use of PHI for research, consent preferences, and acceptability of waiver of consent. We found that 52% were unaware that PHI might be used for research. A majority (77%) felt that HREC approval for use of PHI without consent was acceptable. However, a large proportion (36%) would prefer to be contacted regarding consent.
Conclusion: These findings suggest a lack of awareness that PHI can be used for research and that waiver of consent is acceptable, but not necessarily preferred, in most of the ED patient population. This challenges the use of waiver of consent for secondary use of PHI in ED research.
ED Registrar at Western health, Melbourne. A strong interest in research ethics, quality improvement and diagnostic propperties of biomarkers. Dabbles (or flounders) in triathlon!