Experts by experience

I’ve just spent two days in London attending induction training for my role with the NCRI. My brain has that pleasant ache one has after a good work out.

There were 8 of us all affected by cancer in some way, some were cancer patients, others had lost husbands or children to the disease. We’d travelled from all over the UK including Wales and Scotland. We will be the patients voice on matters relating to clinical trials for our specific area of interest. I met such incredible people all truly passionate about research and finding ways to improve outcomes for cancer patients either through their treatment pathway or in areas of prevention or life beyond cancer. Considering the rather serious topic we all had a great time.

We learnt how we will fit in to the research process, how research is funded, carried out and what is done with the results once they have been collected. We will help to identify gaps in current research and be ‘experts by experience’

Research is funded by you and me. That is either through donations to cancer charities or by paying your taxes to fund NHS trials. Even pharma’s funds come from us indirectly so it is imperative that we have a say in what we want found out, how we want the results to be found and how we implement the results. We are all the consumers of research.

One of the people there was a professor. A highly educated and intelligent guy who works in cancer research in one of our top universities.  His area of specialism was something very complicated to do with DNA repair, genomes and proton beam therapy (I think….well over my head) He often wondered what these theoretical cancer patients he was potentially helping were like. Then he became one. All the research, all the academia, all the data and results and tests became, suddenly very personal to him. He realised that all this work he was doing had a real life person at the end of it….just like him.  He suddenly became a consumer as well as a producer of research.

We will be there to remind the the research scientists, the professors, the academics that the fantastic work they are doing directly affects us. We are experts of our cancer too.

 

 

 

 

 

 

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