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Review of the Australian Code for the Responsible Conduct of Research Submission

ID: 
30
Personal Details
First Name: 
Paul
Last Name: 
Swain
Specific comments
Specific comments: 
Principles in Code

At present there is no requirement for patient involvement in decisions about the research that is done.

I don't believe that this is consistent with current good practice regarding patient involvement and shared decision making.  The principles do set out good practice with regard to the recognition of Aboriginal and Torres Strait Islanders, and therefore I believe that there should be a similar requirement regarding patient involvement in research, so that all research that is done is either:

- patient directed, not researcher directed; or that

- there is a strong preference given to patient directed research, and a requirement for patient involvement,

so that there is a clear benefit to patients and carers from all research that is done.

Specific consultation questions
Question 7: Please comment on which three topics you would nominate as being the highest priority and why.: 
Patient involvement in the direction of research priorities. Collaborative research.
General comments
Comments: 

1.  I have commented on the need for patient involvement and patient directed research in the Principles section.  Please make any corresponding changes to the other sections of the code to ensure that these requirements are consistently stated throughout the code and the guidance.

2.  I have just seen this 22 February 2017 article on the BBC web site http://www.bbc.com/news/science-environment-39054778 discussing a "reproducibility crisis" in science, where research suggests that more than two-thirds of researchers have tried and failed to reproduce another scientist's experiments.

Ritu Dhand, the editorial director at Nature, is quoted as saying "Replication is something scientists should be thinking about before they write the paper".

I do not see this covered explicitly in the code, and if it is there implicitly, then it could be easily overlooked.  I therefore believe that it needs to be covered explicitly, as one of the principles of responsible research conduct.

Page reviewed: 17 September, 2018