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Draft Statement on Consumer Involvement in Health and Medical Research submission

ID: 
36
This submission reflects the views of
Organisation Name: 
Ethnic Communities' Council of Victoria (ECCV)
Please identify the best term to describe the Organisation: 
Non-government 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?: 

The Ethnic Communities’ Council of Victoria (ECCV) applauds the efforts of the Working Committee to revise the Statement on Participation and the resulting document is shorter and more concise than the one developed in 2001. It also commends the achievements of the Committee to use simple and less ambiguous language when drafting the new Statement and therefore improving its readability and comprehension. However, the ECCV suggest several small modifications to enhance the Statement.  

  • Inclusion of case studies

The ECCV proposes that case studies should be included in the section ‘Elements for consumer and community involvement’ to illustrate the effective involvement of consumer and community in medical research.  This will help readers to conceptualise how an effective involvement of consumer and community in health research works.

  • Minority groups (second dot point – page 12)

It is recommended that the expression “minority groups” be removed and the sentence be rewritten as follows – ways to reach vulnerable and disadvantaged groups. In general, the term ‘minority’ is used when describing people identified on religious, cultural, linguistic, ethnic and sexual orientation grounds. The term ‘disadvantaged’ is broader and also encompasses people who cannot participate in medical research because of their health status, financial situation, age, education, gender and class.

Recommendation 1

That case studies be included in the Statement to help multicultural stakeholders understand its practicality

 

Recommendation 2

That the word “minority” be replaced with the word “disadvantaged”

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 ECCV welcomes the five definitions proposed in the revised Statement. However, it suggests that additional definitions outlining the role of consumer in medical research should be included in the Statement. Cancer Australia has developed a number of definitions concerning the role of consumer in medical research and cultural engagement in its report - National Framework for Consumer Involvement in Cancer Control. The Working Committee could consider inserting these definitions in the Statement. The defnitions in the the report of Cancer Australia are as follows – personal engagement, the advocate, the advisor, the expert, the partner and cultural engagement.

Recommendation 3

That additional definitions be included in the Statement

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.: 

The ECCV welcomes the range of models mentioned in the draft document and believes that they empower consumers and communities to have a greater say in medical research. However, it recommends that the Statement should include provisions to dealing with any risks or issues that may arise from the partnership’s implementation. This could take the form of dispute resolution mechanisms consisting of counselling, mediation and arbitration.

 

Recommendation 4

That a problem-solving process be established to resolve any disputes that may occur between researchers and consumer from culturally diverse background.

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. : 

The ECCV notices that steps suggested to put the Statement into practice do not take into account cultural competence in the consumer and community involvement in medical research. Therefore, the ECCV proposes that research institutions and researchers should consider cultural norms, practices, traditions, intra-familial relationships and other culturally appropriate values when partnering with multicultural communities to conduct medical research.

 

Recommendation 5

That researches are offered cultural competence training and beliefs and cultural values be taken into account when involving people from culturally diverse communities in medical research.

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 ECCV proposes that stakeholders should be made aware of the following example of consumer and community involvement in medical research. This example consists of involving communities in health research through small grant allocation. The ECCV invites the Working Committee to visit the following links for more information about the use of a small grants program to involve consumer and community in medical research and using a community-based participatory research approach.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2885839/

http://obssr.od.nih.gov/scientific_areas/methodology/community_based_participatory_research/

Recommendation 6

That the Working Committee considers placing information on community-based participatory research approach and the case study on its website.

Page reviewed: 5 January, 2015