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Draft Statement on Consumer Involvement in Health and Medical Research submission

ID: 
19
This submission reflects the views of
Organisation Name: 
Consumer Advisory Councils UWA and TKI
Please identify the best term to describe the Organisation: 
Other
Personal Details
Questions
Q1. The aim of revising the Statement is to improve language and accessibility. Are there further improvements that should be considered?: 

The Consumer and Community Advisory Councils members from the UWA School of Population Health and Telethon Kids Institute’s Consumer and Community Participation Program (see supporting information) were invited to provide comments on the Draft NHMRC / CHF Statement. They considered if the Draft Statement is written in plain language and if this has the potential to improve accessibility to wider sections of the community. Members applauded the use of the word ‘involvement’ in the revised version of the Statement (rather than participation) as this will address ongoing confusion about people who participate in research.

 

The revised Statement will provide the NHMRC with an opportunity to increase the profile of the importance and value of consumer and community involvement in research, both within the research arena and across the wider community.

 

The Statement has no information about:

  • The NHMRC’s role, how it is funded and how it decides which research will be funded and how funds are disbursed to researchers
  • The ethical review of research and the safeguards that Ethics Committees require of researchers and how this interacts with consumer and community involvement
  • NHMRC’s role and responsibilities as the peak body in Australia for supporting health and medical research with regard to the Statement, its subsequent implementation into NHMRC’s practices and processes at all levels of the organisation
  • NHMRC’s roles and responsibility to promote the value and importance of active consumer and community involvement in all health and medical research
  • The openness and transparency for the use of public funds for example:
    • How consumer and community perspectives are integrated into all levels of the NHMRC’s practices and processes, particularly with regard to research priorities and the grant review process
    • The requirements of all researchers who apply for funding from the NHMRC to provide information about how they will actively involve consumers and community members in their research
    • The requirements of researchers who receive funding from the NHMRC to report back on the consumer and community involvement activities to promote shared learning and continuous improvement
    • The feedback and evaluation mechanism the NHMRC will use to assess if the philosophies espoused in the Statement are integrated into health and medical research policies and practices

 

Consumer and community members generally considered that the NHMRC’s process for seeking feedback on their documents such as the Statement were not community friendly and relied on a high level of knowledge about the NHMRC processes for making a submission.

 

The addition of the following points are required:

  • Include an Introductionsection with:
    • Information about the NHMRC’s role
    • Information about the ethical review of research
    • Include a sub-section The Statement and the NHMRC outlining the roles, responsibilities and commitment of the NHMRC to integrating consumer and community involvement across all of its activities

 

Suggested changes:

  • Statement Overviewchange to paragraph 4:
    • ‘The current draft Statement and its predecessor were developed by NHMRC and CHF because many consumers, community members and researchers recognise that they consumers and community members can add value to health and medical research and that they have a right and responsibility to do so.’
    • Why is Consumer and Community Involvement Important? Query the use of the word ‘intrinsic’ suggest ‘essential’ or  ‘fundamental’ is more appropriate

 

General Comments:

The release of the revised Statement will provide an opportunity for NHMRC to address areas of concern that have been raised consistently by all who contributed to this submission:

  • There is a need for better engagement and better dialogue between consumers, the community, researchers and funders to ensure that there are meaningful opportunities for active consumer and community input into the development of research priorities and the allocation of funding for research. This involvement will lead to a more actively engaged and informed community that provides support for all health and medical research in Australia. This will also promote openness, transparency and accessibility to the community
  • NHMRC must continue and expand its role as a key funder to working more effectively with consumer organisations, community members and other relevant stakeholders to seek solutions for ‘big’ health issues such as obesity, diabetes, smoking, alcohol consumption by ensuring that all research that it funds includes elements of consumer and community involvement.
  • It is considered that more active involvement of consumers and community members in all aspects of research will:
  1. increase awareness in the community of research and its findings
  2. develop a shared learning environment between researchers, consumers and the community;
  3. lead to the community being more engaged and involved in their own health outcomes
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 following additions (underlined) are suggested for the definitions:

Community - a group of people sharing a common interest (e.g. cultural, social, political, health, economic interests) but not necessarily a particular geographic association. Within this definition, it is important to recognise that different types of communities are likely to have different approaches to involvement in research. This also includes individuals within the community who may not share common issues.

Consumer or community representative – a member of a committee, steering group or similar, who voices the consumer and / or community perspective and takes part in the decision–making process. They may be nominated by a consumer or community organisation and be accountable to them.

The inclusion of ‘research participants’ in the Consumer definition causes confusion between active involvement and participating in research – suggest it is deleted

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.: 

Second point: Consumers and community members will be included on all decision-making committees

It is unclear whom this point is referring to. Suggest the inclusion of a stated commitment from the NHMRC that this will be demonstrated on all NHMRC committees including funding panels. This could be outlined in the suggested addition of a subsection The Statement and the NHMRC

The NHMRC’s very positive work in the area community involvement in indigenous health, cancer and dementia must be integrated across all areas of health research.

 

Levels of Involvement:

The sentence ‘To ensure the integrity of health and medical research and accountability to the community, a researcher or research organisation intending to proceed without involving consumers and community members must be able to fully justify that intention’ is very positive but without the appropriate processes and criteria to assess this the sentence undermines the rest of the Statement.

The NHMRC needs to develop processes and criteria within their grant application and review processes to assess any such justification put forward by researchers and / or research organisations for not including consumer and the community in their research. This must be given due space within NHMRC application forms.

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. : 

Additional information required

As suggested above (question 1) include a sub-section: The Statement and the NHMRC that includes:

  • Setting research priorities: this needs to be included in the NHMRC policies and practice and articulated in the Statement
  • Allocating funding at an institutional level: the NHMRC needs to demonstrate their commitment to active involvement by including a budget line item for consumer and community involvement activities in grant applications – organisations such as Cancer Australia have developed a good practice model for consumer involvement in their grant review process. A criteria for assessment also needs to be developed and articulated for grant review panels
  • The NHMRC’s commitment to the translation of research findings into policy and practice

The Statement and researchers:

  • Applying for funding and ethics approval: it is necessary to have a budget line for consumer and community involvement in research to enable researchers to budget appropriately for involvement activities. Having planned budgeted strategies for consumer and community involvement is integral to its success
  • Letting people know the results of research: this should be a requirement and a condition of funding

The Statement and consumer and community members: this section was not clearly understood by many consumer and community who contributed to this submission. Further clarity is needed on the following points:

  • Working within the principles of consumer and community involvement: the principles are neither referenced nor contained within the document
  • Understanding research processes and policies: there is concern that consumer and community member’s contribution may not be fully valued unless they can fulfil this requirement. This may undermine the valuable contribution consumer and / or community members ‘lived experience’ can make to research

Consumer and community organisations should factor the Statement into their programs of support, training, mentoring and nomination in relation to consumer and community involvement in research: It is unclear what the nomination refers to

This section also needs to articulate benefits of consumer and community involvement

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.: 

Involving the community at a project level

Documents that can guide consumer and community involvement at a project level include:

  • McKenzie A, Haines H. Consumer and Community Participation Fact Sheet Series. Perth: The University of Western Australia School of Population Health and Telethon Institute for Child Health Research; 2011.

Good practice examples of the methods that have been used to involve consumer and community members in research can be found at http://www.involvingpeopleinresearch.org.au/index.php/methods

 

Good practice example at a research organisational level:

Documents that support consumer and community involvement in research at an organisational level include:

McKenzie A, Hanley B. Consumer and Community Participation in Health and Medical Research: A practical guide for health and medical research organisations. Perth WA: The University of Western Australia and the Telethon Institute for Child Health Research; 2007.

A good practice example of an organisational approach to consumer and community involvement is the Consumer and Community Participation Program at The University of Western Australia School of Population Health and Telethon Kids Institute which includes the following aspects:

 

Involving the community in research funding processes

Cancer Australia, Cancer Council NSW and Alzheimer’s Australia all have good practice consumer and community participation in their research funding processes.

Page reviewed: 5 January, 2015