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Draft Statement on Consumer Involvement in Health and Medical Research submission

ID: 
5
Personal Details
First Name: 
Sally
Last Name: 
Josh
Questions
Q1. The aim of revising the Statement is to improve language and accessibility. Are there further improvements that should be considered?: 

In view of increasing accessibility also consider:

Making it clear on the revised statment exacltly which of the old documents that the statement is replacing.

Larger font.

Q2. The draft revised Statement contains five definitions: Community, Consumer, Consumer Representative, Involvement and Stakeholders (refer page 4). Are the definitions satisfactory? Are additional definitions required? : 

The word 'engagement' is used a lot currently, so i think you should define that, and  differentiate between 'engagement' and 'involvement'

Q3. The draft revised Statement outlines the Key Elements that underpin effective involvement and Levels of Involvement (refer page 5). You are invited to comment on the identified Key Elements and Levels of Involvement.: 

the 'Key elements' section seems to be more a description of principles than elements; 'elements' might suggest to some people the 'key components' of a whole, rather than what underpins a concept. So maybe this section should be entitled 'principles'?

Re levels of involvement- why not pick one of the models form appendix 2 and include the flow diagram, or develop what you think it a 'best practice' and include that as a flow diagram in your statement/appendix? -  it doesn't mean that everyone MUST use that model, but its helpful for readers to have something visual to look at,  to start with.

Q4. The draft revised Statement includes information about how the Statement should be put into practice (refer page 5). You are invited to comment on this section, including whether additional information should be added. : 

There are a wide range of resources listed, i wonder if people using your resource will look at them. Maybe adding these links on the  NHMRC  'landing page' for the consumer and community involvement in research would be helpful for quicker or opportunistic  access.  I looked at invo.org.uk website  and found they have an online library with a good variety of published research about consumer participation in research, is there any way some of this research could  be synthesised / shared more readily with those who are yet to be convinced of the benefits of involving consumers in research?? (i realise this is less a comment about this document and more of a general comment!)

Q5. NHMRC is considering placing Appendix 4: Useful Resources on our website so that stakeholders can access examples of consumer and community involvement in health and medical research. Please tell us about exemplars that should be included.: 

 I looked at invo.org.uk website  and found they have an online library with a good variety of published research about consumer participation in research, I think this type of research  should be synthesised / shared more readily with those who are possibly yet to be convinced of the benefits of involving consumers in research, so if that is readily accessible via the website it woudl be more noticable. 

The ACHS accreditation standards (at standard 15 ) includes ' research governance' at criterion 4. WIthin this is a standard all about involving consumers in health research - might be a useful resource to add here, to assist those who are ensuring their approach to research fits with standards for accreditation? i realise there are other accreditation frameworks in use of course, but it may be worth mentioning or giving as an example  http://www.achs.org.au/media/38984/table_equipnational_standards.pdf

Page reviewed: 5 January, 2015