VOICE

We are working with the charity Independent Cancer Patients' Voice to pilot a course in London for cancer patient advocates that aims to explain the research pipeline; from ideas through experiments to clinical trials.

This is the first and currently only patient advocate training scheme of its kind in the UK. The course has been titled VOICE (Vision On Information, Confidence and Engagement) Science for Patient Advocates. Patients from anywhere in the UK are welcome.

Our 5-day course aims to give participants basic understanding of cancer biology and an introduction to research terminology and practice.

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Course Details Purpose Course Leaders ICPV Support Feedback News

Course Details

Who can take part?

The course is open to anyone who:

Has personal experience of cancer, either because they have had cancer themselves, or because a partner, close friend or family member has had cancer, or works for a cancer charity
Is already actively involved in cancer research (for example as a member of a trial management group or a clinical studies group)

Participants do not need to have any prior understanding of cancer biology.

Anyone who wishes to take part would be expected to attend all 5 days of the course.

An introduction to basic cancer biology

What cancer is, how it is caused, how it develops and how it is detected and treated.
Course participants will spend time in the research laboratories to help them to build their understanding.

An understanding of different types of cancers

Current understanding, new research technologies and the biology of genetic testing and screening.
Students will also learn how read and interpret scientific papers.

In addition to this scientific course, we are also running a 2-day course focused on Clinical Trial Design and Analysis.

Purpose

Cancer patient advocates participate in government committees, granting bodies, ethics committees; potentially anywhere policy or funding decisions (related to cancer in the UK) are made.

While they act as informed members - many have had, or have cancer - they acknowledge that often their lack of basic cancer biology and clinical trials knowledge can put them at a disadvantage in some discussions.

This training programme is intended to address and overcome this potential disadvantage and it is the first time such a course has been offered in this country.

A precedent for the uses and impacts of such training in informing and empowering the advocates' voices has already been set by the National Breast Cancer Coalition's Project LEAD in the US.

Testimonials of ICPV Advocates from the UK who attended Project LEAD praised the scheme for developing their understanding of basic cancer biology and research study design, equipping them with the confidence, knowledge and skills to contribute to patient-driven, patient-oriented improvements in clinical research at both local and national levels.

Our VOICE course is designed to emulate these results and, based on feedback from our first course in 2013, succeeds.

Course Leaders

ICPV

Independent Cancer Patients' Voice is a patient advocate group, run by patients for patients, bringing the views and experiences of cancer patients (as well as their families and carers) to the wider community and cancer research itself.

They hope to see improvements to clinical research and treatments through a partnership between patients, clinicians and researchers - rather than a view of patients simply as healthcare recipients.

Their statement:

"Members of ICPV are actively involved in many areas of research. To facilitate and enhance their role in these activities, members aim to understand the fundamentals of cancer, study design and current areas of controversy and research.

"Much of this is gained through experience. However, working with the internationally renowned Barts Cancer Institute we have developed a tailor-made course which provides a week-long intensive training in basic cancer biology, introduction to research terminology and study design, and critical evaluation of research proposals and scientific papers.

We have called this course VOICE (Vision On Information, Confidence and Engagement) Science for patient advocates. This course is unique, the only course of this type in the UK."

ICPV provides cancer patients with information on:

Participating in clinical trials/studies
Donating tissue for research
Opportunities to participate in improving cancer services and research

The ICPV website has more information on becoming a member.

For more information, e-mail: voice@icpv.org.uk

Support

Feedback

Testimonies from our students

"Every day my expectations increased and were then exceeded."

"An amazing opportunity which I will probably never get the chance to repeat."

"The practical gave a real insight and huge appreciation of the patience and dedication of the scientists who do this work on a daily basis"

"The best thing about this course was the infectious enthusiasm from the lecturers and mentors."

"I was struck by the conversations with young researchers and their enthusiasm. It gave me an understanding of their different but overlapping research."

"Seeing the breast tissue and analysis was the defining moment of the course."

"A really moving session carried out with respect and care. It changed my view of mastectomy"

"The lab work really put the lectures into context."

"I was really excited to see human cells down a microscope."

"The BCI team were amazing - their enthusiasm was infectious."

"I had a huge childish pride when my experiments were successful."

“I feel very privileged to have participated, it was a wonderful experience”

“It gives me more confidence to interact with the scientific community”

"It comes up in support groups all the time; what happens to your tissue? Now I can talk about it with authority and encourage more people to get involved in research."

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