Patient confidentiality is paramount and making IT experts an integral part of any email-based research team is essential, says Dr Debbie Kralik from the University of South Australia.
"Researchers work to very strict ethical protocols" she says. "However, a variety of complex issues arise during email research that can make the application of traditional ethical standards, such as consent, identity and confidentiality, difficult."
Dr Kralik and her team from the School of Nursing and Midwifery have been using email as part of their joint research with the Royal District Nursing Service into how people live with chronic illness
Together with their technical expert - Dr Jim Warren from the University's Advanced Computer Research Centre - they have developed a 12-point plan which they feel may help other researchers considering email research.
"Using email has enabled us to carry out research with people over an extended period and at a time and pace that suits them, irrespective of geography. Because the people we are working with have chronic illnesses, it also enables us to include people who may not otherwise feel able to participate" adds Dr Kralik.
"But we need to approach this type of research carefully and ensure that as many safeguards as possible are put in place to protect participants."
A number of issues need to be considered before email research is undertaken. These include
- Making sure that people thinking of taking part in the study are very clear about what this will entail and that they provide their informed consent. Dr Kralik argues that people who are housebound or unable to provide a signature would be not be able to complete a traditional form, so email is a valid form of consent.
- Deciding what will be known about people before they participate and introducing safeguards - like asking for the name of a medical practitioner - to root out people who join groups for voyeuristic reasons.
- Developing group rules, or "email etiquette", so that a safe space is created where participants show respect for other members and treat their comments with the utmost confidentiality.
- Making sure that participants understand that, despite the best efforts of the researchers, their privacy and anonymity cannot be guaranteed as emails will be saved on other participant's computers. This can be a particular issue if people use computers outside the home, where mail is automatically scanned or can be accessed by information technology staff
"Although email can pose confidentiality risks, most people now see those risks as part of everyday life and recognise that it is up to them to use it morally and responsibly" says Dr Kralik.
"We believe that as researchers we are duty bound to stress the importance of confidentiality to all participants, while acknowledging that it cannot be guaranteed.
"Making an IT expert part of the research team is invaluable as it enables us to maximise the technical knowledge required to ensure that our end of the process is as secure as possible."
The Kralik team's 12-point plan provides valuable guidance for other researchers, based on their practical experience. It asks:
1. How will informed consent be obtained?
2. What will be known about a person's identity before they become a participant?
3. How can you be sure that you are researching with the people you think you are communicating with?
4. Will pseudonyms and online persona qualify as confidential information?
5. How will participants be informed about issues regarding the confidentiality of any records kept by the researcher or by participants?
6. Will participants be provided with the opportunity to debrief once the study is completed?
7. What will be discussed in the research report?
8. Will participants be able to provide feedback about the written research report?
9. How easily can other people access the group communications?
10. Is it possible for outsiders to find messages from participants? How will the identity of group members be kept confidential in the records and reports of the research?
11. Is there a possibility of harm to the person, the group or the group members by the research?
12. Have colleagues who are knowledgeable about the unique features of cyberspace been consulted about the ethical aspects of the study?
"Researchers using email are still on learning curve but we hope that our experience will add to the debate about the moral and ethical issues that need to be considered" says Dr Kralik.
Further information and press copies of the paper are available from:
Annette Whibley, Wizard Communications
Notes to editors
- The ethics of using electronic mail discussion groups. Kralik et al. Journal of Advanced Nursing. Volume 52.5. Pages 537 to 545. (November 2005).
- Founded in 1976, Journal of Advanced Nursing is read by experienced nurses, midwives, health visitors and advanced nursing students in over 80 countries. It informs, educates, explores, debates and challenges the foundations of nursing health care knowledge and practice worldwide. Edited by Professor Alison Tierney, it is published 24 times a year by Blackwell Publishing Ltd, part of the international Blackwell Publishing group.