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Draft Statement on Consumer Involvement in Health and Medical Research submission

ID: 
29
This submission reflects the views of
Organisation Name: 
Centre of Health Services Research, The University of Wester
Please identify the best term to describe the Organisation: 
Educational institution – tertiary
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 Statement is in plain language and, though brief, clarity was not sacrificed.

Further improvements:

  • It would be helpful for the introduction to include information on the National Health and Medical Research Council’s role, how it is funded and how it disburses funds to researchers.
  • Explanation would also be useful on the oversight role that Ethics Committees play in research, including the safeguards they require researchers to include in research projects in order to protect research participants as this is not clearly understood by all Australians.
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 definitions are relevant to all communities; however, members suggested that the ‘stakeholder’ and ‘involvement’ definition positions could be exchanged rather than display them alphabetically.

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.: 

Section: Elements for Consumer and Community Involvement

General comment:

The final dot point ‘This framework is considered equally appropriate and applicable to all health research affecting Australians’ is not supported within the rest of the document or within the current funding processes. That is, there is no requirement across all research areas to actively involve consumers and the community.

Specific comments:

Various consumer or community groups that have been subjected to a wide range of rigorous research activities have been concerned that they have not been involved in all stages of the research and suggest the addition of the below dot point:

  • Consumers and community members should be involved in all stages of the research process from planning to implementation of the finding of research.

Consumer or community groups are also concerned about the technical or academic language used by researchers which may act as a barrier to being involved in the research and/or being a participant of the research and suggest the inclusion of the dot point below:

  • Language must be inclusive of consumers and community members

Suggested changes:

The following key elements underpin effective involvement:

  • 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.
  • Consumers and community members should have the opportunity to be involved in all stages of the research process from planning to implementation of the finding of research.
  • Community involvement in the development, conduct and communication of the research.
  • Communication of research plans, progress and results to support effective capacity exchange.
  • Ethical research aiming to be of practical value to communities and their service providers.

The NHMRC’s framework for Indigenous health research is a highly developed example of effective community involvement designed to ensure the community ‘voice’ is an integral part of all research conducted with Aboriginal and Torres Strait Islander people. This framework is considered equally appropriate and applicable to all health research affecting Australians.

The NHMRC Roadmap II: Strategic Framework for improving the health of Aboriginal and Torres Strait Islander People through Research guides research that is conducted with Aboriginal and Torres Strait Islander people.

 

Section: Levels of Involvement

General comments:

To ensure the integrity of health and medical research and accountability to the community, justification for a lack of consumer and community involvement needs to be included within the funding application process. Questions about consumer and community involvement within the research (or justification for the lack of consumer and community participation) should be included on the funding application form and criteria are required for it to be assessed in the application review panel process. This process should be linked with ethics processes.

Specific comments:

In response to paragraph 3: Enabling research organisations to justify their lack of consumer and community involvement undermines the information provided within the rest of the document, specifically the sections:

  • Why is it consumer and community involvement important?’
  • ‘Elements for consumer and community involvement’ statement ‘active involvement is integral to all stages of the development of research programs, policies, guidelines and strategies’.

It also undermines the efforts of research Institutions who do involve consumers and community members in their research processes and practices.

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. : 

General comments:

The work of researchers, research institutions, consumers and community members in relation to consumer and community involvement should be reflected in the funding application process. This could be affected through inclusion of the following elements:

  • Guidance on consumer and community involvement for the National Health and Medical Research Council and other research funders.
  • Grant applications require space to document the consumer and community involvement activities.
  • Criteria are required to assess consumer and community involvement - Assessment within the application process would demonstrate reward and recognition for involvement.
  • Guidance on assessing consumer and community involvement for reviewers of funding applications.
  • Inclusion of consumers and community members on funding panels to aid assessment of consumer and community involvement.
  • Inclusion of budget line item to cover costs related to appropriate consumer and community participation in funded research.

 

Section: The Statement and consumer and community members

The introduction of assessment of consumer and community participation activities within the funding application processes of the NHMRC would provide leadership to researchers and research organisations. Furthermore, it would demonstrate the value that is placed on consumer and community input into research and a belief in the following points that can be found throughout the Statement:

  • improved openness and ethical transparency in the conduct of research (p4)
  • improved accountability and openness over the use of public money (p4)
  • increased opportunities to continuously improve the quality of research (p4)
  • research being conducted that is relevant to community needs (p4)
  • consumer and community perspectives and ‘lived’ experiences are valued and incorporated into the development of research priorities and projects (p5)
  • start planning and implementing involvement as early as possible (p5)
  • consumer and community involvement must add value to the research (p6)
  • reach out to an appropriately diverse range of consumers and community members to ensure the most effective involvement strategies are developed and implemented (p6)

The involvement of consumers and community members in the grant application assessment process as members of grant review panels (GRPs) and as partners in the decision about research priorities within the NHMRC would enable the following points (found within the Statement) to be fully realised:

  • improved accountability and openness over the use of public money (p4)
  • increased opportunities to continuously improve the quality of research (p4)
  • research being conducted that is relevant to community needs (p4)
  • consumer and community perspectives and ‘lived’ experiences are valued and incorporated into the development of research priorities and projects (p5)

Cancer Australia demonstrates effective processes for the assessment of consumer and community involvement within the grant application assessment and funding process.


Additional information required:

  • Guidance on consumer and community involvement in the processes of the National Health and Medical Research Council and other research funders
  • Consumer and community involvement in funding application processes


Specific comments:

Section: The Statement and research institutions

The following dot point should be added:

  • An expectation from the institution that involving consumers and community members in research is standard practice, this must be supported with leadership from senior level staff

Section: Appendix 3.1, dot point 2

Suggest last dot point is more explicit and read: “Invite consumer, consumer organisations and community members to be investigators or co-authors on published output where appropriate” 

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.: 

General comment:

Examples should be of implementing consumer and community involvement at an organisational level as well as examples of individual projects and programs.

Example of involvement at an organisational level:

The Consumer and Community Advisory Council at The University of Western Australia, School of Population Health is an example of how to involve consumers and community members at an organisational level. Details of the Council can be located at http://www.involvingpeopleinresearch.org.au/index.php/methods/councils/sph-council

The University of Western Australia, School of Population Health website includes many examples of research projects that involve the community. http://www.sph.uwa.edu.au/community/consumer-and-community-participation/research-involving-the-community

Examples of involvement at a research centre level:

1. Centre for Health Services Research Community Expo

In order to increase consumer and community participation across the Centre’s research projects, a ‘Community Expo’ was held on the 14th May 2013 at St Catherine College in Nedlands, Western Australia.  The purpose of the Community Expo was to enable consumers and community members to hear about some of the research being conducted within the Centre and then talk directly, on a one-to-one basis, with researchers. The Expo also provided an opportunity to seek expressions of interest from community members who were interested in joining a community reference group for the Centre (see below).

A Community Expo is an opportunity for consumers, community members and researchers to come together to get an overview’ of research being conducted within a particular group or organisation. The Community Expo facilitates the building of relationships between consumers, community members and researchers based on mutual interest in a specific project or topic.

Community members listened to two sessions of three five-minute research presentations followed by a short question and answer session. Community members were then invited to view the posters displayed around the room. Researchers stood next to their posters so that community members had ample opportunity to find out about the research and ask questions.

 

2. Centre for Health Services Research Community Reference Group

The purpose of the Centre for Health Services Research Community Reference Group (the Reference Group) is to provide a community perspective on all current and future research activities and to work in partnership with researchers to inform the community of research findings and outcomes.

The Reference Group membership consists of:

  • 8-12 community members,
  • Director, Centre for Health Services Research
  • Researchers from Centre for Health Services Research
  • Consumer and Community Participation Program staff member

The Reference Group:

  • Provides a community perspective on activities associated with the research within the Centre.
  • Identifies gaps and priorities for research within the Centre to ensure we are responsive to the needs of the community.
  • Provides input into the development of information strategies to inform the wider community about research associated with the Centre.
  • Adopts a collaborative approach when providing advice to researchers on overcoming challenges of involving consumers and community members in their research.

 

Example of involvement at a project level

Research Project: Chronic Disease Outcomes and Enhanced Primary Care in Seniors Improving Medication Safety in Seniors.

This project featured a community forum and a consumer panel.

 

Consultation forum: http://www.involvingpeopleinresearch.org.au/index.php/methods/consultationforums/consultationforums

Three community forums were held in collaboration with the Health Consumers' Council of WA, to seek community feedback about the projects. The forums were promoted to Health Consumers Council networks and community organisations for seniors. The events were attended by 104 people from across the metropolitan and outer metropolitan areas.

 

Senior researchers gave presentations about the research which was followed by small group discussions on the following questions:

  • What are the most important issues about taking prescribed medicines?
  • What might prompt people to talk to a GP if they thought their medicines were causing side effects?
  • Who did people talk to about their chronic medical conditions?

 

At the conclusion of the forum attendees were invited to have ongoing involvement in the research in one of the following ways:

  • Seniors Consumer Panel            
  • Focus Groups
  • Questionnaires / surveys

 

Consumer panel: http://www.involvingpeopleinresearch.org.au/index.php/methods/reference-groups/seniors-consumer-panel

The Seniors Consumer Panel membership consisted of:

  • 8 - 10 consumer members
  • Chief Investigator
  • A researcher
  • The Consumer Advocate

 

The Seniors Consumer Panel was established to facilitate ongoing consumer involvement throughout the research projects. The Panel provided:

  • A consumer perspective and input to the research team.
  • Ongoing advice and guidance regarding issues of importance to health consumers on long-term illness and medication safety.
  • Representative membership on the research management team

 

The Panel met quarterly for the duration of the project. Tasks and discussions included:

  • Input into the development of a series of focus groups which were held in 2008 to further explore key topics and issues raised by consumers at the three community forums
  • Providing input into the questions and results from the focus groups
  • Packaging and labelling of prescription medicines
  • Attendance at four workshops with researchers and health professionals to discuss research findings
  • Meeting with researchers regarding specific unexplained findings from individual research projects
  • Lobbying and supporting the project to the wider community through attendance at forums and meetings
  • Supporting and/or advocating for changes to policy and practice relating to dosing instructions on prescription medicines
  • Presenting about the consumer participation activities in the two research projects at the National Primary Health Care Research Conference in Darwin in 2010

 

Page reviewed: 5 January, 2015