Purpose and function

The purpose of the ANZMUSC Consumer Advisory Group (CAG) is to provide a mechanism for consumer input on ANZMUSC clinical trials and other activities undertaken by the network.

Key tasks for CAG members include:

• Reviewing clinical trial proposals for ANZMUSC endorsement from the consumers perspective, including the relevance of the overall research question to people with musculoskeletal conditions and any barriers to consumer engagement

• Providing advice and guidance to ANZMUSC members regarding consumer research priorities and issues of importance to consumers with musculoskeletal conditions

• Reviewing information sheets produced by ANZMUSC

• Reviewing consent forms of ANZMUSC endorsed trials

• Participating in working groups including policy development forums to help improve care, support and outcomes for consumers with musculoskeletal conditions

We expect that ANZMUSC CAG members will also be involved in other activities including:

• Facilitating links with the community and other musculoskeletal consumer groups

• Raising awareness and advocating for community priorities among ANZMUSC members

• Advising on ways to increase public awareness of the importance of clinical trials

• Advocating participation in research and clinical trials to consumers

• Contributing to or initiating community projects and activities

• Providing comment and input to advocacy documents such as submissions to government, position papers and reports

• Be available for consultation on issues as they arise.

Structure

The ANZMUSC CAG shall consist of up to 12 consumer representatives. CAG members will include adequate representation of musculoskeletal conditions, gender representation and geographic location as possible, and they shall report to the ANZMSUC Executive Committee ANZMUSC Administrative Officer(s). Members from the Consumer Health Forum (CHF) shall report on their activities in line with CHF reporting procedures. The activities of the CAG shall be shared amongst members with opportunities to attend workshops and participate in committee meetings where appropriate. CAG membership activities will be supported by the ANZMUSC Executive Committee and Administrative Officer(s). The CAG shall appoint a Chair who will be the consumer representative on the ANZMUSC Executive Committee.

Meetings

The meetings of the ANZMUSC CAG will be held at least once per year, either face-to-face or via teleconferencing. Teleconferencing facilities will be provided by ANZMUSC to enable members to participate.  Communication between meetings will be by email, as necessary. Each member of the ANZMUSC CAG will be required to attend at least one meeting per year, either in person or via teleconference. CAG members will be invited to attend the annual two-day scientific meeting.

Membership

New members
ANZMUSC CAG membership will reflect a diversity of skills, experiences, demographics and location (as possible).

New members shall be required to submit an application with details of:

• Their experience with musculoskeletal conditions

• Their experience with clinical trials or studies

• Their involvement with other community/consumer groups

• The reasons for wanting to join the ANZMUSC CAG

• Their curriculum vitae

Upon appointment new members of the ANZMUSC CAG shall be provided with access to:

• ANZMUSC CAG Terms of Reference (this document)

• ANZMUSC CAG Introductory Guide

• ANZMUSC CAG member contact details

• Recent ANZMUSC CAG minutes (where they exist)

• Any other information deemed necessary

Essential criteria
All members of the ANZMUSC CAG must be affiliate members of ANZMUSC. All members should ideally have experience with one or more musculoskeletal conditions either through their own experience or through a close family member who they have provided direct support to, or at the very least have a strong interest in musculoskeletal clinical trial research.

CAG members are not eligible for membership of other committees of ANZMUSC, other than as a CAG representative.

Duration of appointment
Membership of the ANZMUSC CAG will initially be for a period of two years. Ongoing appointment as an ANZMUSC CAG member (for a period up to 4 years), will be considered on as “as-needs” basis by the Executive Committee.  Terms of the ANZMUSC CAG may be staggered to ensure continuity of skills and knowledge of the group by offering different renewal options to avoid the complete renewal of the CAG in any one year. Members are eligible for reappointment and any member may resign their membership of the group at any time.

Support for ANZMUSC CAG members
A consumer representative training workshop will be provided for members of the CAG to ensure they have the core skills needed for effective consumer representation and to foster a national, proactive perspective on health system issues.

Unless your role is within health you will receive remuneration for your involvement in accordance with the Australian government’s remuneration tribunal.

The ANZMUSC Executive Committee and Administrative Officer(s) will provide administrative support to ANZMUSC CAG members to minimise any other costs associated with CAG participation.

CAG members will be respected as equal partners within the context of ANZMUSC activities. This includes equal opportunities to voice opinions, professional development opportunities (where deemed appropriate) and support services (as required). Consumers’ experiential knowledge will be equally valued and respected in the context of ANZMUSC activities.

Role of ANZMUSC CAG members

ANZMUSC recognise that members of the CAG are volunteers with professional, personal and family commitments and shall endeavour to accommodate any personal circumstances to a reasonable extent.

CAG reviews

ANZMUSC CAG members are encouraged to contribute to reviewing as many documents (trial proposals, concepts, protocols, Participant Information Sheets, Consent Forms, etc.) as their time permits.  Documents will be circulated to all and all contributions, including ‘no further comments’ are valuable.

Documents not self-selected for review will be allocated to individual members by the Executive Committee based on participation to date, expertise and area of interest.  Mandatory allocations will be restricted, at this point in time, to a maximum of two per member per year.

It is expected that CAG members will meet review deadlines or notify as early as possible to negotiate extra time or re-allocate proposals for review by other CAG members if necessary.

The purpose of the ANZMUSC CAG review process is:

1. To provide a lay perspective on the impact of the proposal on participants

2. To ensure Participant Information Sheets and Consent Forms enable potential participants to make an informed choice whether to join the research study.  Feedback on grammar and spelling is appropriate for these documents

It is expected that CAG members would only object to approval/endorsement/support of a study or concept if it does not concord with the aims of the respective Group or if there are ethical flaws from the reviewer’s perspective.

ANZMUSC will implement organisational processes to ensure:

• Suggestions from the CAG and external consumer groups on priorities for research are presented to researchers

• There is a mechanism for feedback from the researchers to the CAG

Participation in Group Activities

ANZMUSC CAG members may be invited to participate in a number of Group activities, including:

• Contributing to committee or working group meetings

• Participating in workshops (for health professionals and consumers)

• Joining a research team as an investigator

These opportunities will be shared and may be allocated by:

• Continuing participation in an established role

• An expression of interest from the CAG member/s

• An invitation from the Group

Confidentiality and conflict of interest

ANZMUSC CAG members are asked to contribute as individuals with an interest or experience in musculoskeletal conditions, and not as representatives of another group or organisation.  ANZMUSC CAG members must treat all documents, be it research or governance documents, as confidential.  ANZMUSC CAG members must disclose any conflict of interest in any matters being considered by the CAG.  All ANZMUSC CAG members shall be required to sign a Confidentiality Agreement and contact details release form.

Acting as a representative for the ANZMUSC CAG

When attending external meetings or activities on behalf of ANZMUSC, CAG members are asked to reflect the Groups’ goals and objectives and to respect the confidentiality of both Groups’ documents unless disclosure has been authorised by the ANZMUSC Executive Committee.

ANZMUSC CAG members are encouraged to represent the ANZMUSC CAG at external meetings or activities and are required to:

• Inform the ANZMUSC Executive Committee of this prior to the event taking place.

• Use approved media communications resources (PowerPoint presentation, brochures, flyers, etc.) provided by the ANZMUSC Executive Committee

Breach of terms of reference and conflict resolution

Any matters of conflict or breach of terms of reference shall be referred to the ANZMUSC Executive Committee, who will resolve or escalate the matters internally as required.

Produced by the ANZMUSC Working Group, March 2016

Acknowledgement

The document is adapted with permission from:

• The Psycho-Oncology Co-operative Research Group (PoCoG) / The Primary Care Collaborative Cancer Clinical Trials Group (PC4 Joint Community Advisory Group Terms of reference Advisory Panel

• Arthritis Australia National Arthritis Consumer Group Terms of Reference

and informed by:

• Arthritis and Osteoporosis Consumer Engagement and Participation Strategy for Research