Response 1066491212

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Introduction

2. What is your name?

Name
Dr Jann Karp

The current Statement and importance of consumer and community involvement in research

16. What parts of the current Statement have or have not worked well?

Please provide comments in the free text field below.
Important to understand or include the possibility of people researchers seeking a private provision of research approval. Researchers can shop around to have their approval provided. I am wondering if there can be a data base central to approved or refused research ethics projects.

17. Why is consumer and community involvement in research valuable?

Please provide comments in the free text field below.
We are the people who are on the end of researchers approaches. recently I was contacted to take part in a research program and my name was accessed from a public data hospital clinic. I was not sure of the ethics of my name being accessible in relation to a particular topic that they wanted to study. I was wondering because I was in a public clinic not a private health provider.

18. Why does consumer and community involvement in research matter to you?

Please provide comments in the free text field below.
Because of the power relationships involved in research that is being conducted. The researchers operate in a very hiearachial system and the information wanted is actually at the bottom of that hierarchy.

Value statement

19. What overarching values are essential to include in the value statement of the revised Consumer Statement, and why?

Please provide comments in the free text field below.
The role of the Senior Investigator needs to be up front not behind everyone else's name and accessibility to that person must really be practical and open.

20. The values that underpin the 2016 Statement are ‘shared understanding, respect and commitment’. How might this be strengthened and improved in the revised Consumer Statement?

Please provide comments in the free text field below.
The availability of funding in popular topics to research may dictate what is being researched rather than the use of the outcomes being achieved. the amount of indigenous research has exponentially increased with out the level of expertise to engage in this field of work.

21. Should values such as accountability, transparency, collaboration and partnership, equity, diversity and inclusiveness be included in the revised Consumer Statement?

Please provide comments in the free text field below.
Absolutely all of them but whom is going to check the outcomes, and whether the words are practically applied and not just written into the documents.

Better practice principles for consumer and community involvement in research

22. What do you regard as the most important principles that should be included in the revised Consumer Statement?

Please provide comments in the free text field below.
Public Accountability of the progress and results of approved research.

Roles and responsibilities of consumers and community members

23. What roles and responsibilities for consumers and community members should be included in the revised Consumer Statement?

Please provide comments in the free text field below.
There should be an education program for researchers on how to engage with consumers and community members and then there needs to be an assessment on how consumers are engaging.

Roles and responsibilities of researchers

24. What roles and responsibilities for researchers should be included in the revised Consumer Statement?

Please provide comments in the free text field below.
The hierarchy of the researchers and their different roles has to make more important the active involvement of the supervisors. there is a practice of letting researchers struggle on without proper supervision from lead supervisors.

25. Should involvement of consumers and community representatives be an expectation of research?

Please select one item
Yes
No
Not sure
Please provide reasons for your response below.
these relationships must be established prior to the research taking place

26. Is there an ethical imperative to involve consumers and community representatives in research?

Please select one item
Yes
No
Not sure
Please provide reasons for your response below.
You cannot proceed with research in minority/indigenous groups in any area without proper representation independent of the topic being researched.

Roles and responsibilities of research institutions

27. What roles and responsibilities for research institutions should be included in the revised Consumer Statement?

Please provide comments in the free text field below.
That they do not shop around for ethics approval, or shop around for people who are sympathetic to the topic, the questions asked must be looking for a unique answer not giving the answers the researchers want. ask a question and get an answer through the process dont set up the research to provide an answer this does occur in particularly sensitive areas that involve religious debates etc. as one example.

Roles and responsibilities of funders

28. What roles and responsibilities for research funders should be included in the revised Consumer Statement?

Please provide comments in the free text field below.
There must be a clear line of where the money donated is from, and where it is banked and whom is administrating it. this is not always clear, it is not sufficient to say it is somewhere in the university banking system.

29. Should funders of research mandate the involvement of consumer and community representatives in the research they fund?

Please select one item
Yes
No
Not sure

Implementing the revised Statement

30. How should researchers involve consumers and community representatives in their research?

Please provide comments in the free text field below.
Depends on the research and if it highly contentious then there should be a for and not for representative in the discussions.