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Draft Statement on Consumer Involvement in Health and Medical Research submission

ID: 
33
This submission reflects the views of
Organisation Name: 
The University of Western Australia
Please identify the best term to describe the Organisation: 
Educational institution – tertiary
Personal Details
Questions
Q1. The aim of revising the Statement is to improve language and accessibility. Are there further improvements that should be considered?: 

Overall comment:

The Statement is in plain language and accessible to all researchers and research institutions.

Specific comments

The Statement overview states ‘consumer and community involvement includes consumers and community members working with research funders to prioritise research, being involved in grant funding processes and providing advice as members of project steering groups’. However there is no guidance on the Statement and funders in the section ‘Putting the Statement into practice’.

A change is suggested to the following sentence in order to shift the focus onto the contribution of consumers and community members rather than the consumers themselves:  The current draft Statement and its predecessor were developed by NHMRC and CHF because many consumers, community members and researchers recognise that their input can add value to health and medical research and that they have a right and responsibility to do so.’

Additionally comments are listed under point 3.

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? : 

Comments: Definitions are satisfactory with a small exception. We suggest the following change to the definition of Consumer.

Consumer —patients and potential patients, carers, consumer organisations and members of the public – suggest the removal of the term research participant as this could cause confusion.

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.: 

Comments:

Overall impression

We commend the writing and expert panel for their revisions to The Statement. In short, The Statement highlights:

  • Good guidance for institutes, researchers and consumers and community members
  • Is sufficiently succinct and uses plain language that is accessible to all
  • Useful direction on where to get further information
  • The opportunity for involving consumer and community members in translating the results and evaluating the impact of research.

Specific remarks

Elements for Consumer and Community Involvement

The final dot point ‘This framework is considered equally appropriate and applicable to all health research affecting Australians’ is not supported within the rest of the (document – change to Statement) or within the current funding processes i.e there is no requirement across all research areas to actively involve consumers and the community.

 

Levels of Involvement

In response to paragraph 3: Enabling research organisations to justify their lack of consumer and community involvement undermines the information provided within the rest of the document, see earlier comment.

To ensure the integrity of health and medical research and accountability to the community, justification for lack of consumer and community involvement needs to be included within the funding application process. To this end, a question should be asked on the funding application form and criteria required for the response to be assessed in the application review panel process. This process should be consistent and tied in with ethics requirements.

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. : 

General Comments:

A new section is required that highlights how the NHMRC and other funding bodies will/can put into practice the values maintained within the Statement.

 

Specific Comments

Section: The Statement and research institutions

This section requires the addition of a statement about leadership from senior research staff as well as the expectation at an organisational level that involving consumers and community members in research is standard practice – this should be left to individual researchers.

Section: The Statement and consumer and community members

Reference in the Statement is made to the principles of consumer and community involvement, however principles are neither referenced nor contained within the document.

Additional Information to be added: Assessment of consumer and community participation activities included in grant applications.

The work of researchers, research institutions, consumers and community members in relation to consumer and community involvement should be reflected in the funding application process. This could be affected through inclusion of the following elements:

  • Grant applications require space to document the consumer and community involvement;
  • Criteria are required to assess consumer and community involvement - Assessment within the application process would demonstrate reward and recognition for involvement;
  • Guidance on assessing consumer and community involvement for reviewers of funding applications;
  • Inclusion of consumers and community members on grant review panels to aid assessment of consumer and community involvement;
  • Inclusion of budget line item for consumer and community involvement.

An exemplar of the above elements is Cancer Australia which demonstrates effective processes for the assessment of consumer and community involvement within their funding process.

Failure to assess consumer and community involvement devalues and undermines the purpose of updating the Statement. It specifically devalues and undermines the following points that articulated in the Statement:

  • improved openness and ethical transparency in the conduct of research (p4)
  • improved accountability and openness over the use of public money (p4)
  • increased opportunities to continuously improve the quality of research (p4)
  • research being conducted that is relevant to community needs (p4)
  • consumer and community perspectives and ‘lived’ experiences are valued and incorporated into the development of research priorities and projects (p5)
  • start planning and implementing involvement as early as possible (p5)
  • consumer and community involvement must add value to the research (p6)
  • reach out to an appropriately diverse range of consumers and community members to ensure the most effective involvement strategies are developed and implemented (p6)
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.: 

Comments:

Examples should include implementation of consumer and community involvement at an organisational, individual project and program levels.

Page reviewed: 5 January, 2015