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Emergency department patients’ attitudes towards the use of data in their clinical record for research without their consent
  1. Chase Schultz-Swarthfigure1,2,
  2. Anne-Maree Kelly1,2,
  3. Deborah Zion3
  1. 1Footscray Emergency Department, Western Health, Melbourne, Victoria, Australia
  2. 2Joseph Epstein Centre for Emergency Medicine Research, Western Health, Melbourne, Victoria, Australia
  3. 3Centre for Cultural Diversity and Well Being, Victoria University, Melbourne, Victoria, Australia
  1. Correspondence to Dr Chase Schultz-Swarthfigure, Emergency Department, Western Health, Melbourne, Victoria, Australia; c.schultz.swarth{at}gmail.com

Abstract

Background Health research often uses health information, a subcategory of personal information, collected during clinical encounters. Conditions under which such health information can be used for the secondary purpose of research are set out in state, national and international law. In Australia, consent is required or the relevant conditions for a waiver of consent must be met and approved by a human research ethics committee (HREC). Consent for use of health information for research is rarely sought at an emergency department (ED) presentation. Research often occurs after the index visit and gaining consent can be difficult. Waiver of consent provisions are frequently used, but acceptability of this approach to patients is unclear.

Objective To identify ED patients’ knowledge and attitudes towards the use of health information for research, consent preferences and acceptability of waiver of consent.

Methods An online, anonymous survey of adult patients attending two large EDs in Melbourne, Australia.

Results 103 patients completed the survey. We found that 52% were unaware that health information might be used for research. A majority (77%) felt that HREC approval for use of health information without consent was acceptable. However, 36% would prefer to be contacted regarding consent.

Conclusion These findings suggest a lack of awareness that health information can be used for research and that waiver of consent is acceptable, but not necessarily preferred, in most of the ED patient population. Efforts to increase awareness and provide opportunities to express preferences about health information use for research are needed.

  • Research Ethics
  • Emergency Medicine
  • Informed Consent

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Footnotes

  • Contributors CS-S and AM-K were involved in the planning, conduct, including acquisition, analysis and interpretation of data, and the reporting of the study. They are also the joint guarantors and accept full responsibility for the aforementioned work. DZ was involved in the planning, interpretation of data and the reporting of the study.

  • Funding This study was supported by departmental funds only.

  • Competing interests None declared.

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.

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