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Draft Statement on Consumer Involvement in Health and Medical Research submission

This submission reflects the views of
Organisation Name: 
Bedside to Bench
Please identify the best term to describe the Organisation: 
Non-government organisation
Personal Details
Q1. The aim of revising the Statement is to improve language and accessibility. Are there further improvements that should be considered?: 

We have the opportunity at this time to evolve and progress the practice of community engagement in health and medical research.  Bedside to Bench are grateful that there has been some effort in the form of this draft statement, however further consideration should be made to the purpose of consumer and community engagement in health and medical research.  The draft statement notes "Consumer and community involvement is about research being carried out with or by consumers and community members rather than to, about or for them". Bedside to Bench recommend that the focus of community engagement in research should be that research is for the community, patients and their families.  If this concept is valued as a priority, the process of engaging the community will become more meaningful as the focus of any community engagement in research becomes the need to develop projects that address the needs of patients and their families, that is, research for the community. As a result we will have research that has a better chance of being translated into policy and practice.

It is unclear from the language whether the draft statement aims to guide individual researchers, research institutes or the community.  As a result the impact is diluted and does not offer clear guidance for any group.  Bedside to Bench note that Consumer Health Forum have been involved in the development of the draft statement. As this statement is to be implemented by researchers and research institutes, it is recommended that representatives from this stakeholder group be involved in future working groups.  The community expects a seat at the table when issues that are being discussed affect them and the same coutesy should be afforded to all stakeholder groups.  This may result in more clarity in relation to who the draft statement aims to benefit, and the practical implementation of the statement.

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? : 

Bedside to Bench is a non-profit, community engagement in research organisation providing connection between the community, researchers, industry, clinicians and government.  It is not part of what we do, it is what we do.  Our own definition of community includes patients, carers, clinicians, researchers, policy makers, industry, and all stakeholders that have a role to play in improving our health system and advancing medical research. The word consumer is confusing and there is a general consensus that it does not make sense in the context of health and medical research.  If we, as a community, truely value the experience of patients and their families, the expertise of clinicians and researchers and the contribution of government and industry, there is no need to use the word consumer in this context.

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.: 

Bedside to Bench agree with the sentiment that "Active involvement is integral to all stages of the development of research programs, policies, guidelines and strategies."  However, from a practical perspective, there is a limited number of active consumers who can engage with researchers at this level and at all stages of development.  There is a simple supply-demand issue that needs to be acknowldeged and addressed.  Bedside to Bench have developed a Community Engagement in Research Program to support researchers and research institutes in the practice of community engagement.  Through this program, we acknowledge that there are certain stages within the research process where community engagement has a greater impact. Given the limited resources available to support community engagement in research, Bedside to Bench recommend that the NHMRC and Consumer Health Forum consider prioritising the stages of research where community engagement is essential.   

There is an additional key element that is required for effective community engagement in research and that is evaluation.  There has been some evaluation in relation to the process of community engagement, however there needs to be more attention to evaluating community engagement in research in relation to its impact on research itself.  Bedside to Bench aim to do this over the next five years to identify at which stages of research, community engagement has the greatest impact.

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 focus of the draft statement appears to be on the process of community engagement rather than how we listen and respond to the needs of patients and their families, and the impact that engagement can have on research itself. Bedside to Bench was established to support researchers and research institutes in their community engagement efforts, acknowledging that the value of patients and carers is that they bring insights in relation to illness and the health system; a personal experience. This is not something that can be taught, but we can support each stakeholder group to gain the most value from the process of engagement. 

Bedside to Bench supports the statement that engagement in research needs to be budgeted. Additional guidance may be required and it is encouraged that the NHMRC and funding bodies allow budgeting for certain community engagment in research activities through their funding application policies.

There are a number of well established challenges and barriers that have been identified in the context of community engagement in research, such as:

1. Inadequate knowledge, skills and preparedness of patients and carers to strategically articulate their needs and likewise, inadequate knowledge, skills and preparedness of researchers to meaningfully engage with patients and carers.

2. The dominance of organisational cultures (of health professionals, researchers, policy makers, health service providers and organised advocacy groups) imposing judgements on patients and carers.

3. Organisations not being systematic in their approach to community engagement in research.

4. Patients and carers being time poor and contributing their services on a volunteer basis.

5. Differences in state and national approaches.

6. Lack of evaluation of previous community engagement in research approaches , particularly in relation to the impact on research.

7. Current training for patients and carers to participate in the research process is limited in scope and has focused on the review of grants, rather than supporting the community to provide feedback and work with the research teams.

8. Feedback is received from patients and carers at the point where projects are developed; this is often too late in the process to have an impact on project development.

The draft statement does not adequately address these well-established barriers to implementing the practice of community engagement in 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.: 

Bedside to Bench have developed a program to support researchers and the community to work together and implement the practice of community engagement in research.  Details about the program can be found on our website www.bedsidetobench.com or via email yourvoice@bedsidetobench.com

A recent article has also been publiched in Cancer Forum http://www.cancerforum.org.au/Issues/2014/July/Articles/Understanding_consumers_research_decision-making_process.htm

Page reviewed: 5 January, 2015