Training course for patient advocates
Earlier in the year, four Cancer Insight Panel members had an opportunity to join a training course for patient advocates. The course is titled VOICE (Vision On Information, Confidence and Engagement) and is available to patients in the UK. The course is run by the Independent Cancer Patients' Voice (ICPV).
The ICPV is a patient advocate group led by patients for patients. It brings the views and experience of cancer patients, their family and carers, to the cancer research community. They believe clinical research is improved by patients being partners with clinicians and researchers, rather than passive recipients of health care.
The 5-day residential course takes place at Barts Cancer Institute in London on the first week of September each year. The course is open to anyone who has personal experience of cancer, either directly or indirectly, or works for a cancer charity and covers an introduction to basic cancer biology and research. Attendees don’t need to have any prior understanding of cancer biology to attend. This is the first and currently only patient advocate training scheme of its kind in Europe. It aims to inform and empower advocates to contribute to patient-driven, patient-oriented improvements in clinical research.
The course had 16 attendees in total, with four attendees sponsored by Cancer Research UK. The course started with a welcome meal followed by five full days of lectures, practicals and presentations. Researchers explained the importance of Patient and Public involvement which validates the importance of sharing voices and personal experience with them.
What our attendees said about the course
Really grateful to have this opportunity and would recommend to anyone, knowing that the issues raised will be raised by others and hopefully improved. I admire the organisers and speakers were informative and inspiring. Thank you.
Lisa
It was an amazing week and I do feel privileged to have been sponsored by Cancer Research UK to take part in it, so a very big ‘thank you’. Overall, I’d encourage anyone to go on it.
Andrew
What a week! It was exhausting, especially for someone with chronic fatigue, but despite this I would do it again in a heartbeat! Amazing. The detail we went into learning about how cancer develops; the kindness and keenness of the research teams and the opportunities we had to work hands on in the laboratories, fully supported, was second to none. I can’t thank Cancer Research UK enough for enabling and funding us to do this course. I highly recommend it to others. I feel even more enthusiastic about the need to maintain a presence in research to make sure that the research impacts the patients and public in a positive meaningful way and is not research ‘for research’s sake’. I could say so much more! Once again, thank you so much for the opportunity to complete this course.
Faaria
Yes, the VOICE course was great! I learnt so much about cancer, sequencing and how to best communicate information as a patient advocate, and the people were so lovely. I was actually very sad that it went so quickly! If there is anything similar to this course in the near future, please let me know as I’d love to participate.
Claudia
