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Draft Statement on Consumer Involvement in Health and Medical Research submission

ID: 
21
This submission reflects the views of
Organisation Name: 
Consumer Dementia Research Network
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?: 

General points

  • The document is quite wordy and needs some editing and tightening up.

  • What is the final formatted document likely to look like? It would benefit from some creativity in layout.

  • Under ‘Why is consumer and community involvement important’ it seems unnecessary to state the now well-known WHO declaration of 1978. In any case, the cited point from the declaration is not specific to involvement in research. Further, while the ‘right’ of people to be involved is likely to be universally accepted, the idea that they have a duty to do so might be problematic. Why not simply state that consumer involvement in research is founded on the core principle that people who are affected by research have a right to have a say in what and how research is undertaken.

Language

The language is still rather cumbersome particularly in relation to using the phrase ‘consumer and community’. It might have been much simpler, both for comprehension and for consistency with international terminology, to adopt the terms used for some years now by the UK NHS National Institute for Health Research’s national advisory group INVOLVE viz using the broad term ‘public’. INVOLVE uses this term to cover:

  • patients and potential patients

  • people who use health and social care services

  • informal (unpaid) carers

  • parents/guardians

  • disabled people*

  • members of the public who are potential recipients of health promotion programmes, public health programmes, and social service interventions

  • groups asking for research because they believe they have been exposed to potentially harmful substances or products (for example pesticides or asbestos)

  • organisations that represent people who use services.

*We note that the term ‘Disabled people’ is problematic and needs modification or it may not require specific listing as it is covered by other listed terms.

In addition, it might have been helpful to have clearer statements about what ‘involvement’ actually means and distinguish it from the commonly used term ‘engagement’ and ‘participation’ in research.

Accessibility

If the intent of the revised statement is to make it more accessible to consumers and to support and encourage them in becoming involved in health and medical research, it is not clear how this will happen.

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? : 

See comments above in response to q1 which suggest modifications in terminology used namely using the term ‘public’. However, considering the definitions which are provided we make the following suggestions to improve clarity:

Community

Original: 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.

Suggested change: Community —a group of people sharing common interest(s). These might be cultural, social, political or economic interests or interest in particular health issue(s). The community may not necessarily have a common geographic association. Different types of communities are likely to have different approaches to involvement in research.

Consumer

Original: Consumer — patients and potential patients, research participants, carers, consumer organisations and members of the public.

Comment: Including ‘research participants’ here is confusing. People don’t become ‘consumers’ by virtue of the fact that they are research participants. While some research participants may come under the definition of consumer not all research participants will.

Suggested change:Consumer — patients and potential patients; people who use health and social care services; informal (unpaid) carers; parents/guardians; members of the public who are potential recipients of health promotion programmes, public health programmes, and social service interventions; organisations that represent people who use services.

Consumer representative

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

Suggested change: Consumer representative — a member of a committee, steering group or similar, who voices the consumer perspective and takes part in the decision-making process. They may be nominated by an organisation that represents consumers or by a community and may be accountable to them.

Involvement

Original: Involvement – consumers, consumer organisations, community members, researchers and research institutions working in active partnerships to shape decisions about research priorities, policies and practices.

Suggested change: Involvement – refers to an active partnership of consumers/consumer organisations/community members with researchers and/or research institutions. ‘Involvement’ means doing research ‘with’ or ‘by’ the public rather than ‘to’ ‘about’ or ‘for’ the public.

Stakeholders

Original: Stakeholders - An individual or group from within or outside research organisations with a key interest in research. This might include members of professional bodies, government agencies or funding bodies as well as consumers and community members. Stakeholders can provide support or expertise and may influence decisions about the research and its findings.

No change suggested.

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.: 

Key Elements

The ‘Key Elements’ might be better referred to as ’principles’ underpinning effective involvement.

Original wording:

• Active involvement is integral to all stages of the development of research programs, policies, guidelines and strategies.

• Consumers and community members will be included on all decision-making committees.

Suggested rewording

  • Active involvement is integral to all stages of the research process

  • Active involvement may take the form of consultation, collaboration or user control

  • Consumers and community members will be included on all relevant decision-making committees

Levels of Involvement

This heading might be better as Types of Involvement. The term ‘Levels’ is used in the international literature when distinguishing between engagement with consumers (sharing information), participation of consumers (e.g.as research participants) and active involvement with consumers.

The statement “The level of involvement selected for any research activity will depend on the purpose of the involvement” needs clarification.

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. : 
  • This section is very long and needs editing.

  • The first paragraph on p5, 6 appears more directed at researchers/organisations.

  • The meaning of the dot point:  consumer and community involvement must add value to the research, is open to interpretation and misuse.

  • The following sentence is unclear in its meaning and intent and needs editing: While Consumer and community involvement can be incorporated at any stage of the research cycle, ideally this involvement will inform the developmental stages of a project.

  • This sentence is in the wrong place (it should be in the section relating to researchers/institutions): Ensuring consumers and community members’ time and expertise is valued and appropriately remunerated or otherwise acknowledged, will assist in developing strong partnerships and guard against tokenistic involvement activities.

  • Under the section relating to consumer and community members, add something to the effect that consumers should expect to receive appropriate remuneration for their time and expertise.

  • Under Resources for Consumer and Community Involvement: Research funding bodies also need to factor in funding and resources for consumer and community involvement.

  • Something needs to be included about whether is to be mandatory or required for researchers to adopt the principles in the statement and if so what the drivers would be – e.g. could it be linked to research funding to ensure compliance.

  • Under the heading Resources for consumer and community involvement, there needs to be a dot point noting that a person may need to be accompanied by a supporter. This would apply not only to people with dementia, but also to those with other disabilities.

  • Additional information should be included with guidance on reporting on consumer involvement in peer reviewed journal articles. This is important to add to the body of knowledge regarding the impact of consumer 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.: 

Appendix 3:

The NHMRC Research Cycle is complex. The INVOLVE one offers better outcomes and is more succinct. NHMRC’s does not have an implementation step or evaluation step.

Appendix 4:

Add link to Alzheimer’s Australia’s Consumer Dementia Research Network./

UK’s INVOLVE has huge number of resources and projects reporting on impact of public involvement. Thse could have specific links

 

Page reviewed: 5 January, 2015