A study week for patient advocates to learn about the science behind research

patient representatives looking at microscope

In early September, four Patient Involvement Network members and Cancer Grand Challenges Advocacy Panel (CGCAP) members had the opportunity to attend a residential science study week hosted by the Independent Cancer Patients Voice at Barts Cancer Institute (BCI) in London.

“The course was fascinating, and it gave a detailed insight into the research of cancer. I was able to contribute from my own experience of having a very rare cancer and felt valued.”  Kathy Morse, a CRUK patient network member

Independent Cancer Patients Voice is a patient advocate group led by patients for patients. It brings the views and experiences of cancer patients, their families 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.

“A thoroughly enjoyable course taught by academics who may not always get the credit that they deserve. Classroom based mornings and labs in the afternoon.” Gita Patel, a CRUK patient network and CGCAP member

The course had 16 attendees who spent the week immersed in the world of cancer research, focusing on lectures and lab practicals led by expert researchers. 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 is open to anyone who has personal experience of cancer, either directly or indirectly, or works for a cancer charity AND is already actively involved in cancer research through patient involvement or advocacy. Attendees didn’t need any understanding of cancer biology or have a science background to attend.

“Great lectures in the classroom, a lot of emotions in the laboratories, many personal stories shared in between the two, generously. There is a lot of value in all of this. Every detail is taken care of, every question is addressed, and every moment is valuable. This training has the power to transform you: you learn a lot, experience even more, meet passionate people, bring back home long-lasting memories and huge value that equips and empowers you further in your advocacy work.” Ivana Cattaneo, a CGCAP member

The course runs annually and is also an opportunity to meet like-minded patient advocates who will most likely remain contacts and perhaps friends for years to come.

Kathy and Gita are both members of our involvement network. Join and we’ll send you our fortnightly newsletter which lists all the latest opportunities to get involved, we're looking forward to working with you.

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