VOICE Science for Patient Advocates 2014

Zoe Leech Posted in BCI Spotlight Articles, Engagement 09 September 2014

VOICE Science for Patient Advocates 2014

Last week we hosted our second VOICE (Vision On Information, Confidence and Engagement) Science for Patient Advocates course, which aims to give participants basic understanding of cancer biology and an introduction to research terminology and practice.

The course is open to cancer patients, carers and cancer charity staff. We aim for the majority of students to be cancer patients or carers, as well as some cancer charity staff members if it would contribute significantly to their work. Our students consist of people who:

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

It is the only course of its type in the UK; you can find out more about the background, purpose and details of the programme on our VOICE information page.

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


P1010707This year we welcomed 15 students to our institute; 10 current and former patients, two carers and three from cancer charities, as well as course leader Bec Hanley and Independent Cancer Patients' Voice president, Maggie Wilcox.

Participants met on our campus on the Sunday evening prior to the course beginning, to meet and get to know each other a little before they started their hard work. 

“I met some great people”

“The worst thing about this course was going home!”

Breakfast was served at 8:00 sharp each morning with a half-day's lectures beginning at 9:00, and after lunch our students headed over to the Teaching Laboratory for the afternoon's practical work:

VOICE 2014 Lecture Subjects
 Monday Tuesday  Wednesday  Thursday  Friday
Basic Cancer Biology I
(What Cancer Cells Do)
Basic Cancer Biology II
(How Cancer Cells Do It)
Types of Cancers and New Research Techniques Types of Cancers and Genetic Testing and Screening How to Read Scientific Papers
VOICE 2014 Practical Sessions
 Monday Tuesday  Wednesday  Thursday 
Solutions and Dilutions Studying DNA Examining Cancer Cells Bedside to Bench, Tissue & Biomarkers

“Lab work has enhanced my understanding; there are fewer holes in my knowledge”

“As a result of this course I have total respect/awe for those working in labs and research generally”

These sessions were designed to give students a feel for cancer research through learning basic molecular biology lab techniques including: calculating and preparing solutions; using equipment such as Gilson pipettes, balances, microscopes and tissue culture hoods; extracting and fingerprinting their own DNA from cheek cells; observing and manipulating cancer cells and normal cells growing in culture; and preparing stained tissue slides.

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

P1010688

The Bench to Bedside session involves our Professor of breast pathology, Louise Jones, carefully examining breast tissue donated by a mastectomy patient at Barts. She identies any cancerous or precancerous lesions, while explaining the process fully to our students. Following this, students went on to stain breast tissue prepared on slides to experience pathologists' work.

“I go home with a newfound respect for science… I feel if I do get a cancer I will be viewed as a person and not a group of cells!”

"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."

On Monday evening we were privileged to intoduce Professor Clare Isacke, Deputy Director and Dean at the Institute for Cancer Research here in London. Clare spoke about her journey through academia, from frustrated PhD student, through enthusiastic itinerant post-doc, to leading her own research team.

DSC03896

The last day's morning lectures aimed to help students navigate through a scientific research paper - how to read a journal article; to get the important information and critically appraise the quality of the work. 

Other activities included a Guided Tour of the Charterhouse by the Master, Charlie Hobson, on Tuesday evening, and joining our 10th Anniversary Celebration on Wednesday evening, as we mark the tenth year of cancer research teams coming together at Barts. We will be holding more events throughout the year; watch this space!


Overall there was a great sense of cameraderie in the group by the end of the week. That so many students expressed sentiments about the course changing the way they would speak to patients was very encouraging.

“It will inform my work in talking to patients about consent and reading papers on basic science”

“I’m now able to talk to other patients with more experience and knowledge to answer their questions about research”

A common theme to comments was students explaining how the experience helped them consolidate their own knowledge - that they knew lots .

“I was able to index and put into place all the snippets I did not know I already knew”

“I’ll be more confident in reading journal articles”

You can find many more photos in our Facebook album, on Flickr and Pinterest, but here's a selection that hopefully gives a feel for the course:

NCRI

You can also find tweets and links in our Storify.

Many thanks to all our students, lecturers, organisers and other staff who gave their time to make the week such a success. Remember to find us at NCRI if you will be there - both BCI and ICPV will have stands!

“A fantastic learning experience”

“An incredible amount of varied information, exercised and input throughout the week, including lab work”

ICPV will also be following up with our students after 6 months to find out what impact the course has on their work and what kind of difference it makes to them.


With thanks to: Bec Hanley, Maggie Wilcox, Adrienne Morgan, John Marshall, Louise Jones, Richard Grose, Michael Allen, Sally Dreger, Sally Smith, Ketan Patel, Abbie Fearon, Delphine Lees, Tanguy Lechertier, Fevzi Demircioglu Alastair Ironside, Bakhouche Bakhouche, Dan Berney, Katie Hale, Robert Carver and all support/administration staff, as well as the funders who helped make it possible.

2014funding

Photographs by Marianne Baker, Bec Hanley, Anna Wallace and Adrienne Morgan.

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