NHMRC Public Consultations

Skip Navigation and go to Content
Visit NHMRC website

Draft Statement on Consumer Involvement in Health and Medical Research submission

ID: 
35
This submission reflects the views of
Organisation Name: 
Cancer Australia
Please identify the best term to describe the Organisation: 
Government department – Federal
Personal Details
Questions
Q1. The aim of revising the Statement is to improve language and accessibility. Are there further improvements that should be considered?: 

Cancer Australia considers that the aims of the revision have been met, as overall, the language and accessibility of the document have been improved upon from the previous version published in 2002. The information is well-presented, the language used is clear and concise, and the level of detail provided is generally appropriate for the audience.

In order to further strengthen and improve the language and accessibility of the revised Statement, consideration could be given to:

  • Providing additional guidance on the importance of consumer engagement with a broader range of consumers, including people from culturally, socially, and geographically diverse backgrounds. This could include:

    • Targeted engagement of particular population groups, such as Aboriginal and Torres Strait Islander peoples;

    • Targeted engagement at various stages of the research cycle, such as early engagement in the development phase; and

    • Identification of the different levels of responsibility that exist, such as the varying responsibility between an organisation and a health professional researcher.

  • Including key information about Levels of Involvement and useful resources, and state, territory, national and international consumer organisations in either the main body of the document or as attachments, rather than directing consumers to web links in the appendices for further information. This could further improve accessibility by reducing the requirement for the consumer to open subsequent web-pages for additional information.

  • Conducting a full editorial review of the document to ensure the accuracy of grammar and spelling.

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? : 

Cancer Australia believes that the inclusion of definitions for key terminology within the Statement is useful and has the potential to improve consumer understanding of these terms, and ultimately enhance overall comprehension and accessibility of the draft Statement. The five definitions have been well chosen and are clearly explained, however the definitions for ‘consumer’ and ‘consumer representative’ could benefit from further refinements to improve consumer understanding:

  • The definition of ‘consumer’ may be further improved by clarifying the difference between ‘consumers’ and ‘research participants’ - the ‘Statement overview’ highlights the importance of recognising that consumer and community involvement is distinct from research projects, however the definition for ‘consumer’ includes research participants. This definition may also be strengthened by amending the language used to remove the emotive element. This could be achieved by altering the text ‘patients and potential patients’ to ‘people with cancer or an experience of cancer’.

  • While the definition of ‘consumer representative’ provides a valuable overview of the role of these representatives in the research process, it may be beneficial to draw on the definition within Cancer Australia’s National Framework for Consumer Involvement in Cancer Control (the Framework). The definition of ‘consumer representative’ within the Framework has been reviewed to ensure consistency across all state and territory jurisdictions. The National Health and Medical Research Council contributed to the development of the Framework in conjunction with a wide range of stakeholders and consumer representatives. 

The revised Statement could also benefit from the inclusion of additional definitions for a number of other key terms used throughout the Statement, such as ‘medical research’ and ‘researcher’. This is particularly important given that one of the aims of the statement is to improve consumer involvement and participation in health and medical research, including the prioritisation of research funding, grant funding processes, and the provision of advice as members of project steering groups.

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.: 

Cancer Australia considers that the ‘Elements for consumer and community involvement’ and ‘Levels of Involvement’ sections provide useful information regarding the importance of consumer and community involvement in the various stages of the research cycle, and the different levels of consumer involvement recommended within each research activity.

The Key Elements identified within the Statement may be further enhanced through reference to the National Framework for Consumer Involvement in Cancer Control, which was developed by Cancer Australia in partnership with Cancer Voices Australia. This Framework is designed to enhance meaningful consumer involvement at all levels of cancer control to improve the outcomes and experiences of people affected by cancer. Although it was developed specifically for the cancer control environment, it has broad applicability, including in the health and medical research environment. The Framework identifies four key elements which are essential for effective consumer involvement in cancer control as well as the criteria required for each element. The key elements are: committed organisations; capable consumers; inclusive groups; and shared focus. 

It is noted that this section of the Statement includes specific information about engaging with Aboriginal and Torres Strait Islander peoples. It may be useful to expand on this information and include a statement about the importance of engaging with a wide range of different stakeholders across all types and levels of health and medical research, particularly with those whose health outcomes are poorer, such as people from culturally and linguistically diverse backgrounds, people from lower socio-economic areas, and people from rural, regional and remote communities.

Cancer Australia considers that the ‘Levels of Involvement’ section of the Statement provides stakeholders with clear information regarding the range of consumer and community engagement models available. This section may be strengthened by including additional information about the value of consumer involvement in grant application and assessment processes, as well as further information about how each of the identified consumer engagement models have been successfully implemented.

In addition, this section may be further enhanced by including high-level details of the various levels of consumer involvement in the main body of the document, rather than through web-links to additional resources. This would enable consumers to quickly and clearly gain an understanding of the different roles consumers can play when engaging with organisations.

It may also be useful to include a statement recognising that the role of consumers varies based on their capabilities, and that as consumers develop their engagement capability, they will be called upon to advocate for others and to provide further advice. An outline of the different roles consumers can take when engaging with organisations is provided in Cancer Australia’s National Framework for Consumer Involvement in Cancer Control. The Framework identifies five types of consumer involvement and provides detailed information regarding the various roles and responsibilities of each type. These levels include: personal engagement; the advocate; the advisor; the expert; and the partner. This approach is valuable in ensuring that consumers and organisations are aware of the anticipated outcomes for each of the roles. As mentioned previously, there is potential for this Framework to be utilised more widely and for other health care organisations to adapt the Framework to suit their own needs.

Consideration should also be given to the inclusion of a chart or diagram which shows the relationship between each of the different levels of involvement, the skills required for active engagement at each level, and clear articulation of the role of both the consumer and the organisation. This could assist consumers and organisations in identifying the depth and level of consumer participation required.

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. : 

Cancer Australia supports the inclusion of information for stakeholders regarding how the Statement should be put into practice. The inclusion of this guidance will further enhance the role of consumers and the community in health and medical research.

This section may benefit from additional information regarding any formal training opportunities available for consumers, to ensure community members are well-informed and able to effectively contribute their knowledge and experience throughout the various stages of the research cycle.

It may also be useful to include a list of the practical support tools and implementation strategies available which may assist stakeholders in the implementation of the Statement. One example is Cancer Australia’s Consumer Involvement Toolkit, which contains over 90 web-based practical tools to assist a range of stakeholders to actively engage with consumers around a shared vision and focus. In addition to the Toolkit, Cancer Australia has developed the Cancer Learning website, which includes 23 learning modules to develop consumer expertise to participate in research and clinical trials. These resources are both available through the Cancer Australia website and support the National Framework for Consumer Involvement in Cancer Control.

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.: 

Cancer Australia agrees that the inclusion of ‘Appendix 4: Useful Resources’ may be valuable for stakeholders seeking further information regarding examples of consumer and community involvement in health and medical research.

This list may be further enhanced by including a brief description of each resource to assist consumers and researchers in determining which resource is the most suitable and relevant.

Cancer Australia has developed a number of internationally recognised resources which address the role of consumers within the health context. These resources were developed in consultation with a wide range of stakeholders, including consumers, clinicians, and representatives from Government agencies such as the National Health and Medical Research Council.  These resources include:

  • The National Framework for Consumer Involvement in Cancer Control: This resource was developed by Cancer Australia in partnership with Cancer Voices Australia to enhance meaningful consumer involvement at all levels of cancer control. The Framework is the result of engagement with a wide range of stakeholders including Government Agencies, cancer control organisations, consumer representatives, and researchers. The resource can be accessed online through the Cancer Australia website - http://canceraustralia.gov.au/sites/default/files/publications/national_...

  • Consumer Involvement Toolkit: Cancer Australia has developed a series of over 90 web-based practical tools to assist CEOs and executives, service managers, health professionals, researchers, and policy makers to actively engage with consumers around a shared focus and vision. The National Health and Medical Research Council played an active role in the development of this online tool kit. The Consumer Involvement Toolkit is accessible through the Cancer Australia website at http://consumerinvolvement.canceraustralia.gov.au/

  • Consumer Learning – Consumer Involvement in Cancer Cooperative Trials Groups: This web-based resource has been developed to enhance the contribution of people affected by cancer to cancer clinical trials research. The site includes 23 learning modules to build consumer expertise to participate in research and clinical trials. The Consumer Learning website is accessible at http://consumerlearning.canceraustralia.gov.au/

Page reviewed: 5 January, 2015