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					                           Consumer Research Panel for Cancer Clinical Research

We are looking for people affected by cancer who might like become members of various committees involved
in cancer research.

This might mean you are a cancer patient, a carer or previously been treated for cancer. As people who take
part in clinical trials are able to choose whether to take part or not, we use the word ‘consumer’ to define those
who get involved in such committees and groups.

The following notes provide an outline of the responsibilities and the further information.

Main role responsibilities
Consumer members are required to contribute to the activities of the Cancer Clinical Trials Unit Scotland
(CaCTUS) by:
      Trial Steering Committee membership
      Study outline review for CaCTUS development

Consumer members are required to contribute to the activities of the Clinical Trials Executive Committee and
In-House Trials Advisory Board (IHTAB) by:
      Regularly attending and participating in IHTAB meetings, which meet every two months on average.
       You will be have the opportunity to contribute from a consumer perspective to clinical trial protocol
       design and development - for instance acceptability of trial design, recruitment process, ethical issues
       and feedback on patient information sheets / letter of invitation content and design. You may be
       invited to become a consumer member of a Trial Steering Committee.
      CTEC meets every month and you will have an open invitation to attend, with voting rights when in
       attendance. There is a maximum of two consumer seats at CTEC. You may be contacted to give
       comment on specific aspects of study applications, for instance acceptability of trial design.
      Both committees meet at the Beatson West of Scotland Cancer Centre (BWoSCC), Glasgow.

    In general, consumer members are required to:
       Assist the Committee(s) in understanding some of the perspectives of patients, their carers and the
        public that are relevant to the work of the Committee(s).
       Prepare for group meetings by reading meeting papers and raising any issues for clarification with the
        committee Chair or Vice-chair as appropriate
       Respect any requests for confidentiality, and to declare any conflicts of interest if they arise
       Identify personal training needs with the Consumer Involvement Steering Group and participate in
        appropriate training courses as required
       Contribute to any evaluations of their role and the activities of the Committee(s)
       Advise on public awareness and cancer clinical research promotion within patient networks/support
        groups

Attendance fee
Attendance fees are available for agreed training events and conferences in agreement with the Consumer
Involvement Steering Group. More detailed information about the process of claiming an attendance fee will be
provided.

Expenses
All reasonable expenses that arise from involvement in agreed group meetings as part of the consumer’s role
will be reimbursed.

Training and support
Consumer members will be expected to attend induction and ongoing training as part of their role. Members
will be offered the support from the Consumer Involvement Steering Group with all the practical issues of group


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Final Draft Cancer Clinical Research Consumer Research Panel: role description and person specification
membership such as help with claiming expenses, access to meeting papers and reports and providing scientific
mentorship where appropriate.

Role description for members of the Consumer Research Panel for Cancer Clinical Research

Role:                Member of the Consumer Research Panel for Cancer Clinical Research

Duration:            The usual term of office is 2 years, with a possibility extension in agreement with the
                     Consumer Research Panel Steering Group

Working                     Head of Cancer Clinical Trials Unit Scotland
Relationships:              Scottish Cancer Research Network Clinical Lead
                            Chief Investigators and Principal Investigators
                            Head of Trial Coordination for Cancer Research UK Clinical Trials Unit
                            Head of Biostatisitics for Cancer Research UK Clinical Trials Unit
                            Clinical Nurse Specialist for Clinical Trials
                            Cancer Research UK Senior Nurse
                            Other members of the Consumer Research Panel
                            National Cancer Research Institute Consumer Liaison Group
                            National Cancer Research Network Consumer Liaison Lead

Expenses:            Travel expenses and other appropriate out of pocket expenses are reimbursed. Members
                     may claim an attendance fee for agreed meetings and training events

Background Information
Best Research for Best Health (DH 2006) outlines a national vision to improve the health and wellbeing of the
nation through research which focuses on the needs of patients and the public. National Cancer Research
Network (NCRN) www.ncrn.org.uk/ defines consumers as patients, relatives and carers and other members of
the public affected by cancer.

What is the Cancer Research UK Clinical Trials Unit? www.crukctuglasgow.org/
The Beatson West of Scotland Cancer Centre www.beatson.org.uk/ is Scotland’s largest cancer centre, and the
second-largest in the UK. As a result, the workload is varied – each year, the Beatson team sees over 8,000
new patients, and more than 14,800 courses of chemotherapy and 6,350 courses of radiotherapy are
administered.

The Cancer Research UK Clinical Trials Unit is based within the Beatson West of Scotland Cancer Centre in
Glasgow. The Beatson is the lead centre for the delivery of non-surgical cancer care for the West of Scotland.
The Clinical Trials Unit co-ordinates and manages around 80-100 cancer clinical trials that are open to
recruitment at any given time and these range from 'first in man' phase I and pharmacological /
pharmacodynamic studies to multi-centre phase III studies.

What is the Cancer Trials Unit Scotland (CaCTUS) www.cactusonline.org.uk/
CaCTUS, the Cancer Clinical Trials Unit, Scotland, is a partnership between the Cancer Research UK Trials Unit
in Glasgow and the NHS ISD Cancer Clinical Trials Team in Edinburgh. CaCTUS is accredited by the UK
National Cancer Research Institute (NCRI) and offers support for all aspects of management of cancer clinical
trials. As an organisation CaCTUS is committed to working with investigators to develop and manage new
cancer clinical trials. The head of CaCTUS is Prof Jim Cassidy.

What is the Scottish Cancer Research Network (SCRN)?
The SCRN is a team of research staff who support the recruitment to and management of cancer clinical trials
in Scotland. There are three regional networks and the West of Scotland branch is lead by Prof Jim Cassidy



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Final Draft Cancer Clinical Research Consumer Research Panel: role description and person specification
and currently incorporates Greater Glasgow & Clyde, Ayrshire & Arran, Forth Valley and Lanarkshire Health
Boards.

The core objectives of the SCRN at the time set up in the West of Scotland were to:
       Increase accrual of patients to cancer trials.
       Promote equity of access to trials for all patients with cancer in the West of Scotland area.
       To develop a portfolio of trials in each of the Health Board areas in the region.
       Ensure that all trials activities supported by SCRN are conducted to regulatory requirements.
       To increase patient awareness of the potential benefits of participation in a research trial.

Regional support for the SCRN-W staff in the surrounding Health Board areas is provided by a core team based
at the Cancer Research UK Clinical Trials Unit Glasgow (CTU).

What is the Experimental Cancer Medicine Centre (ECMC)? www.ecmcnetwork.org.uk/
The ECMC network is a joint initiative between Cancer Research UK and the UK Departments of Health. The
aim of the ECMC is to bring together laboratory and clinical patient-based research to speed up the
development of new therapies and biomarkers by evaluating new drugs to optimise, target and individualise
patient treatment. The centre takes ideas from laboratory programs and develops them into clinical studies.
The ECMC in Glasgow encompasses the NHS (Beatson West of Scotland Cancer Centre), Glasgow University
(Laboratory bases at Garscube and The Western Infirmary Campus), and Beatson Institute facilities
www.beatson.gla.ac.uk/ .

What is the In-House Trials Advisory Board (IHTAB)?
IHTAB is the mechanism for developing ideas brought to us, in the main by local Investigators. The concept is
to help Investigators build these ideas into high quality submissions for funding bodies. Expertise within IHTAB
can ensure that they are feasible, safe and efficient. Most importantly of all we can help make them as
relevant to real practice as possible and help to develop new standards of care by doing well designed clinical
based studies.

What is the Clinical Trials Executive Committee (CTEC)?
The Clinical Trials Executive Committee reviews all research protocols (both Investigator driven and
pharmaceutical company sponsored trials) that will recruit cancer patients from the West of Scotland and will
make use of SCRN and CR-UK CTU resources. The decision to approve / reject or refer back a protocol is taken
after considering the following:
       The scientific merits of the trial (including statistical considerations)
       How it relates to other trials running in the West of Scotland and Beatson Cancer Centre
       How it fits into the regional research strategy
       Pharmacy issues
       Nursing staff issues
       CTU / SCRN-W resource requirements

Declaration of interests
All group members are required to declare if they have any interests that might be in conflict with the work of
the group that they are in. A conflict of interest does not stop you from being a member of a group. However it
does mean that you cannot take part in any discussions or decisions made on a project/issue where you have a
conflict of interests. If in doubt you should seek advice in the first instance from the Committee Chair.

Confidentiality
Members of the group must not communicate any confidential information that they learn as a result of being a
member of the group. However, there may well be occasions on which group members are specifically asked to
share information within their own communities or seek the opinions and views of others. If you are unclear
about whether or not information that you have access to is confidential or not, please seek clarification from
the Committee Chair.


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Final Draft Cancer Clinical Research Consumer Research Panel: role description and person specification
Person Specification

Factor                    Essential Attributes                                Desirable Attributes
Qualifications            None                                                None
Experience                Current or recent experience (within past 3         Committee experience, links         with
                          years) of cancer services as a patient, carer,      consumer networks, groups
                          relative, member of the public.
Skills                    Willingness to familiarise with research and        Willing to keep up to date with current
                          medical language                                    cancer research issues
Knowledge                 Knowledge and understanding of the                  To have an understanding of cancer
                          consumer perspective.                               research
Personal Qualities        Good communicator. Ability to listen to             Self confident in a mixed group of
                          others and express own view from a                  consumers and professionals. Able to
                          consumer perspective using a constructive           respond to appropriate challenging
                          approach                                            tasks and distil key information from
                                                                              information and provided meeting
                                                                              papers




Application Process
If you are interested in applying please complete and sign the application form and diversity monitoring
questionnaire and return to:

Chloё Cowan
Cancer Research UK Clinical Trials Unit
Beatson West of Scotland Cancer Centre
1053 Great Western Road
Glasgow G12 0YN

Further Information
If you would like any more information before making an application, please contact Chloё Cowan on 0141 301
7206 or email chloe.cowan@ggc.scot.nhs.uk

Selection Process
The post will be openly advertised and short listed candidates will be interviewed by some of the members of
the Consumer Involvement Steering Group

The whole group comprises:

        Lead Clinical Trial Clinician
        Clinical Trial Clinician
        Head of Biostatistics
        Head of Trial Co-ordination
        Clinical Research Nurse Specialist
        Senior Nurse for Cancer Research UK
        Consumer Liaison Lead NCRN (National Cancer Research Network)




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Final Draft Cancer Clinical Research Consumer Research Panel: role description and person specification

				
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