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Draft Statement on Consumer Involvement in Health and Medical Research submission

ID: 
22
This submission reflects the views of
Organisation Name: 
Breast Cancer Network Australia
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?: 

BCNA believes the Statement is easy to understand and that its structure is accessible. The Statement clearly sets out why meaningful consumer involvement in health and medical research is important and the elements needed for meaningful involvement to occur, and provides valuable guidance regarding how the Statement may be put into practice.

 

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? : 

While the definitions contained in the Statement are largely satisfactory, BCNA suggests the following changes / additions be made:

Community

  • ‘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.

 BCNA suggests that the following statement be added to the definition of community:

‘It is also important to recognise that some communities face a variety of barriers to involvement in research’.

Consumer representative

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

BCNA suggests that the following statement be added to the definition of ‘consumer representative:

‘When acting as a consumer representative, individuals take into account the various needs and interests that others may experience, not just their own individual experience’.

Consumer organisation

Because ‘consumer organisations’ are referred to throughout the Statement, BCNA submits that a definition of ‘health consumer organisations’ should be included. The following definition contained in the Consumers Health Forum of Australia (CHF) and Medicines Australia report, Working Together: A Guide to relationships between Health Consumer Organisations and Pharmaceutical Companies could be considered.

Health consumer organisations – 'not-for-profit organisations that represent the interests and views of consumers of health care. They may range from small volunteer groups to large organisations, and generally promote views that are independent of government, the pharmaceutical industry and professional health service providers’.[1]    


[1] Consumers Health Forum of Australia (CHF) and Medicines Australia Limited report. (2008). Working Together: A Guide to relationships between Health Consumer Organisations and Pharmaceutical Companies, pp. 1-8.

 

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.: 

BCNA supports the key elements set out in the Statement. However, BCNA submits that the importance of meaningful involvement be highlighted. While the section calls for ‘active involvement’ in ‘all stages of the development of research programs, policies, guidelines and strategies’, inclusion of the term meaningful would help ensure that specific consideration is given to the actual nature of the involvement (e.g. the role of consumers in particular projects, the aims of involvement, etc.)

 

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. : 

While BCNA welcomes the Statement’s recognition of the need to ‘start planning and implementing involvement as early as possible,’ we submit that the planning and implementation stages of consumer involvement are quite distinct phases. It would be valuable if the Statement contained greater recognition of the fact that researchers need to devote considerable time to thinking about the purpose of engaging consumer representatives on a research project, how consumer representatives will be engaged, and how consumer representatives will be supported by the researcher or committee to engage meaningfully. This initial planning stage is fundamental to ensuring that consumer engagement is meaningful and not tokenistic. A lack of clear planning may even be counterproductive if consumer representatives do not have a clear understanding of the intended research, feel their expertise is not recognised, or do not have ways of sharing their expertise.

BCNA also submits that a section should be added that specifically addresses the role of consumer representatives in relation to reviewing basic science funding applications. The December 2004 Model Framework for Consumer and Community Participation in Health and Medical Research notes that ‘basic science may be the most challenging area for consumer and community participation’.[1]  It has been our experience that, despite the training provided by BCNA and the high level of skill and expertise held by BCNA Consumer Representatives, Consumer Representatives often feel ill-equipped to provide meaningful advice to researchers developing basic science projects. Given the unique challenges inherent in consumer involvement in basic science research, we suggest that the Statement provide specific guidance to researchers about the role of consumer representatives in relation to reviewing basic science grant applications.

Specifically, we suggest that following points be included:

  • When reviewing laboratory-based, basic science funding applications, the role of consumer representatives is not to comment on the technical scientific methods proposed, but to consider the implications of the research and whether it may lead to practical benefits for individuals in the future.
  • Consumer representatives should review and provide feedback about the lay summary of the proposed research project, ensuring it is clear and logical.
  • Given the highly technical nature of basic science projects, researchers should ensure that they discuss their proposed research with consumer representatives in a thorough and clear way, ensuring that consumer representatives have a clear understanding of the aims of the research and how it will be carried out.

[1] National Health and Medical Research Council. (2004). A Model Framework for Consumer and Community Participation in Health and Medical Research, pp. 1- 61.

 

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.: 

BCNA would be pleased to be listed in Appendix 4: Useful Resources.

Breast Cancer Network Australia (BCNA)
www.bcna.org.au
Phone: 1800 500 258
Email: satt@bcna.org.au 

Since 2001, BCNA has run the internationally recognised consumer representative program, Seat at the Table (SATT). Through SATT, BCNA invites, trains, appoints and supports women who have had breast cancer to become consumer representatives. BCNA maintains a register of women throughout Australia who have a range of experiences and are trained to represent the broad views of Australians affected by breast cancer. BCNA’s Consumer Representatives participate in BCNA’s three-day Science & Advocacy Training program, where they learn about the latest in breast cancer treatments, familial breast cancer and genetics, psychosocial and survivorship issues women affected by breast cancer may experience, research methodologies and processes, clinical trials and key terms of epidemiology and statistics. BCNA’s Consumer Representatives receive ongoing support from the BCNA Policy Team in their appointments.

Through SATT, BCNA Consumer Representatives are able to partner with and contribute to the work of scientific research programs by representing women with breast cancer to ensure their voices are heard, providing input on funding applications, advising on project methodologies and results, assisting with information statements and consent documentation, assisting with clinical trial recruitment, disseminating research findings, and raising awareness of research amongst Australians affected by breast cancer and the general public.

Researchers and organisations wishing to involve BCNA Consumer Representatives in their work should contact BCNA at satt@bcna.org.au or 1800 500 258.

 

Page reviewed: 5 January, 2015