Page 30 - Experience Based Co-design - a toolkit for Australia

Experience Based Co-Design – A toolkit for Australia
Q Targeted analysis of data involving minority/vulnerable groups whose data is to be separated out of that data collected or analysed as part of the main QA/evaluation activity.
Triggers which may indicate need for ethical review
If one of these triggers applies the NHMRC National Statement on Ethical Conduct in Human Research 2007 should be consulted. If ethical review is not required and publication is being contemplated strong consideration should still be given to obtaining ethics approval or if that’s not possible a statement affirming that an alternative approach to ethical review is deemed appropriate. The resource list below contains links to definitive NHMRC documents and examples of state government and university guidelines for ethical approval of quality assurance activities. There are also resources AND guidelines relevant for working with Aboriginal and Torres Strait Islander people.
Irrespective of whether ethics is sought or not depending on the outcome of the above process you should consider:
Some form of social support in case anyone involved in the project is affected by the issues that arise. This could include patients, interviewers, staff, facilitators and those involved in filming and editing
When using EBCD with potentially vulnerable groups, the ethical issues arising from the process can be more complex – particularly when it comes to preparing them for, and supporting them through, the co-design stage. The process can be extremely rewarding, but patients, families and staff can find it challenging too, so you need extra preparation. When working with these groups, the steering group or project team should include someone with experience of dealing with the psychological and ethical issues that may arise, such as a clinical psychologist
Resources
Ethical Considerations in Quality Assurance and Evaluation Activities. NHMRC. 2014. http://bit.ly/2AyxPCP
Human Research Ethics Committees- Quality Improvement & Ethical Review: A Practical Guide. NSW Government. Health. 2007. http://bit.ly/2BCo0RM
Do Quality Improvement/Assurance Activities Need Ethical Approval? ACT Government. Health. 2007. http://bit.ly/2ANLjuQ
Human Research Ethic Committee. Quality Assurance Guidelines. University of Newcastle. 2008. http://bit.ly/2jEJ8ib
National Statement on Ethical Conduct in Human Research. NHMRC. 2007. http:// bit.ly/2BCoCH4
NHMRC guidelines for Aboriginal and Torres Strait Islander health research. 2003. http://bit.ly/2ANfCC1
Aboriginal peoples participation in their health care: a patient right and an obligation for health care providers. http://bit.ly/2i9dOHW
The Lowitja Institute. https://www.lowitja.org.au/research