Research Partners: Terms of ReferenceVersion 1.1, May 2009

The Terms of Reference described below should act as a guide for potential Wales Cancer Trials Unit (WCTU) Research Partners. They should give you a better idea about your role in this project if you become a Research Partner. They explain what we would expect from you, as well as what you can expect from us. The Terms of Reference can change in response to your feedback.

1. Background to the Wales Cancer Trials Unit

The WCTU is dedicated to improving clinical practice in cancer through quality research evidence. We are a one stop shop for a clinical trial, from the basic idea, to producing reliable evidence to change practice. The WCTU is a National Cancer Research Institute (NCRI) accredited and UKCRC registered Clinical Trials Unit and receives core funding from Cancer Research UK (CR-UK) and Marie Curie Cancer Care. Our offices are based in Cardiff, where we work with clinicians and researchers from within the UK to develop trial ideas, in any cancer area, that are then run and coordinated by the WCTU. We hope that the results of the trials will be used by the NHS to determine future treatment in cancer patients.

2. Membership

The main requirements that we think Research Partners need are:

• A general interest in cancer treatment and care
• An enthusiasm for being involved in these trials
• A high attention to detail, necessary to undertake work in a rigorous, scientific environment

You do not need to have any previous experience of research, although this would be helpful. Of course, you are free to end your involvement at any time, although we hope that all Research Partners would like to be as committed as possible throughout the course of the trial(s) they are assigned to.

3. What we can provide to Research Partners

If you are selected to become a Research Partner, we are committed to providing you with:

• An opportunity to learn about, actively contribute to, and influence research
• A supportive research environment
• Appropriate and relevant training, where it might be helpful
• A Trial Manager, to act as your scientific mentor and first point of contact for queries or difficulties
• Opportunities to meet other Research Partners to discuss the trials
• Expense payments for attending meetings

4. We will work with you to:

• Help you to learn about and understand the trial(s) you are assigned to by providing a tailored programme of teaching to meet your training needs
• Identify research and/or administrative tasks that you can help with
• Support you in the activities that you undertake

We will provide a supportive environment for your involvement. We are not able to give specific information or advice on treatments that you, or people you care for, might have been given or may be receiving. However, we can put you in touch with groups or individuals who can provide emotional support and advice, should you want this.

5. Key responsibilities and aims

If you are selected to become a Research Partner, you will represent the lay persons perspective on the Trial Management Group (TMG) of our trials. The TMG are responsible for co-ordinating and managing the trials activities. Other members of the TMG will include:

• Chief Investigator and Co-Investigators (these are usually hospital consultants and/or surgeons who have developed the trial idea with the WCTU)
• A nursing advisor (usually a hospital research nurse)
• A pharmacy advisor (usually a hospital pharmacist)
• Trial Manager (the person assigned by the WCTU to manage the day-to-day activities of the trial)
• Data Manager (the person assigned by the WCTU to manage the trial data)
• Scientific Lead/Senior Statistician (experts in trial design, statistics and research data analysis)
• Scientific Director of the WCTU
• Other members of the WCTU trial team as defined in the trial Protocol

Specific tasks you will be asked to be involved in, and commit to are:

• To attend, or dial into, the Trial Management Group meetings. Meetings will be held approximately two times a year for the duration of the trial. During the set up of a trial meetings may be monthly. Each meeting will last for about 2 hours.
• Review and comment on draft trial materials, including trial Participant Information Sheets and trial publications, over a period of approximately 2.5 years
• Provide telephone and/or written correspondence in relation to relevant queries
• Help to produce and disseminate the results of the trial to patients.

6. Meetings and communications

We will arrange for you to visit the WCTU, or to have a telephone conversation with us, so that you can find out more about the WCTU and the trials before you decide whether or not to become a Research Partner. We will try to keep this meeting very informal and will avoid any technical language or jargon. This meeting will give you:

• A chance to meet members of the WCTU
• The opportunity to ask any questions you may have about role or the WCTU
• We will also use this meeting to ensure that you meet the person specifications required for the role.

After this first meeting, we will contact you in the way you prefer, to inform you whether or not you have been accepted. If you need to ask any questions, or if you want us to explain something after the meeting, you can contact us Monday to Friday between 09:00 and 17:00. We will do our best to answer all enquiries promptly and clearly.

7. Expense payments

Where needed, we can reimburse you in the following manner for attending each meeting (values to be confirmed):

• A nominal fee for attendance
• Funding towards travel costs, where attendance is in person
• A contribution towards any essential carer costs
• Training course fees

Wherever possible, we will try to pay for all travel tickets in advance. Otherwise, we will aim to reimburse expenses as quickly as possible

8. Person Specification Attributes

Essential

• An interest in cancer
• Fluent in written and spoken English language
• An understanding of basic medical terms
• Regular access to a telephone

Desirable

• Physically fit enough to attend meetings in person, where required
• Regular access to the internet
• Good communicator/able to express own views in a mixed group of professionals and consumers
• Experience of cancer, either as a patient, or caring for someone with cancer
• Committee experience

Not Important

• Previous experience of reviewing clinical trial protocols and documents X

Contact

Dr Annmarie Nelson, Wales Cancer Trials Unit (WCTU), School of Medicine, Cardiff University

6th Floor, Neuadd Meirionnydd, Heath Park, Cardiff, CF14 4YS

Tel: (0)2920 687 473, Fax: (0)2920 687 501

Email:

Website: www.wctu.org.uk

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