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Draft Statement on Consumer Involvement in Health and Medical Research submission

ID: 
26
This submission reflects the views of
Organisation Name: 
Melbourne Melanoma Project Consumer Reference Group
Please identify the best term to describe the Organisation: 
Consumer organisation
Personal Details
Questions
Q1. The aim of revising the Statement is to improve language and accessibility. Are there further improvements that should be considered?: 

…Also to provide a clearer understanding of the research benefits when the consumers, community members and researchers are actively consulted and involved in the process. Without their input and involvement the benefits are unlikely to be realised, and the outcomes will not reflect their requirements. In light of this, consultation and involvement need to be an integral part of the research and evaluation process.

Page 3. A vision statement is not usually written in the future tense. It provides a sense of shared purpose, an image of a desired future or picture of the future you seek to create, described in the present tense, as if  it were  happening now e.g. Consumers, community members and researchers working in partnerships based on understanding, respect and shared commitment to research to improve the health of Australians.

Consumers, community members and researchers working with research funders to assist in the prioritisation of research. They would not prioritise it as is suggested.

Need to clarify the meaning of impact. This is a word that has different meanings for different disciplines and can be positive and negative

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? : 

Not sure why members of the public are included under consumer definition. Consumer advocate may be better than consumer representative. They advocate on behalf of the consumer.

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.: 

Need to include the words consultation and involvement as key elements. When discussing engagement and research processes these two elements are generally seen as different. While the consumer, et al provide input at each stage there are generally four key elements of interaction:  (not sure whether involvement throughout the paper is used correctly. We believe there are other elements as well as involvement which are also applicable in health and medical research.)

  •  Information gathering
  • Information provision
  • Consultation
  • Participation/Involvement.

 

Elements

Information gathering

Information gathering is an ongoing process that provides effective feedback and information upon which NHMRC and stakeholders can make informed decisions via: 

-          structured questionnaires

-          community surveys

-          submissions

-          meeting with specific groups

-          individual discussions, etc.

Information Provision

Information provision is an ongoing process that is often the primary form of stakeholder and community engagement.

Consultation

Consultation is about gaining a two-way flow of information in order to inform the decision-making process. 

Participation/Involvement

Participation is a collaborative process in which the community, consumer, researchers and relevant government and non-government bodies work together to define a problem, identify priorities, develop solutions and implement plans

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. : 

Perhaps there needs to be included a section on 'principles of best practice' as this could further assist the researcher as to why they should seek input and involve community et al, for example:

Principles of Best Practice

 

The research and evaluation process will review consumer, stakeholder and community engagement practices in the context of key principles of ‘best practice’:

 

Responsive: involving the consumers, community and stakeholders in how they want to be consulted.

Timely: commencing dialogue early to ensure better outcome.

Comprehensive: being inclusive of all groups.

Frequent: making contact with the consumers, community and stakeholders at regular intervals.

Two-way: establishing information flow both ways and being heard.

Flexible: adapting processes for engaging the community et al as circumstances change.

Honest: building robust relationships underpinned by trust.

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.: 

The Melbourne Melanoma Project (MMP) is an excellent example of a consumer enhanced research project. This collaborative project advancing melanoma research across multiple sites including: the Peter MacCallum Cancer Centre, The Ludwig Institute Cancer Research, Austin Health; the Victorian Melanoma Service, Alfred Hospital; and Border Medical Oncology, Wodonga, is totally underpinned by its Consumer Reference Group (CRG). The CRG are involved in MMP at every level including governance, research planning, project reviews, funding applications, research advocacy, community awareness and communication. The MMP-CRG consists of 8 Victorian members who are melanoma survivors, patients or carers that share a passion to conquer melanoma. They have also formed very strong links with other consumer melanoma groups across most of Australia.

 MMP incorporates a medical research cohort of approximately 1700 patients who have donated melanoma tissue to research. MMP is funded by the Victorian Cancer Agency and has been the recipient of two grants totalling almost $7,000,000. The CRG have assisted in these successful applications and have also championed better access to melanoma tissue for researchers. Their advocacy for research and consumer involvement saw them awarded the PeterMac 2013 Team Award for Community Contribution.

 There are 21 scientific investigators and 22 collaborators working on the current version of MMP.

[NHMRC has removed individual contact details of the Chief Investigators and Managers]

Website: http://melbournemelanomaproject.com/

Page reviewed: 18 January, 2016