Sam Alexandra Rose (Episode 23), Patient and Public Involvement Manager | Sam uses her own experiences to help improve research involvement
Nothing about us without us
Sam’s work focuses on making sure patients are integrated into research as equal partners rather than research subjects. This means that she helps to organise opportunities for researchers to consult patients about what is most important to them and their quality of life.
“PPI is getting patients involved in research by making them equal partners. That can look like a lot of different things, but it’s really getting the opinions of the most important people in the research, because if you think about it, people with bowel cancer, for example, are the people who are going to be benefiting most from this research.”
From patient to PPI
Although being relatively new to Bowel Research UK and the world of managing PPI, Sam is well aware of what it is like to be a patient. Sam was diagnosed with bowel cancer in 2010 at the age of just 22. On top of that she has since had uterine and duodenal cancer.
Genetic testing revealed that Sam and her parents have Lynch syndrome. This 1-in-a-million inherited DNA mutation puts her at much higher risk of developing cancer. Fortunately she’s currently all clear, but will need regular screening.
This experience also set her on the journey she is on now. Sam used to work for a digital marketing agency where Bowel Research UK were a client. Sam began doing some guest blogging for them and in due course the CEO offered her the PPI Manager role. Although she didn’t have any PPI experience the CEO thought her personal experience and communication skills were a huge asset.
“I didn’t really see my patient experience as being professional experience. It kind of felt like two different things to me. It’s something that I guess I take for granted a little bit, that I have this experience and understanding. I guess I sometimes forget that other people don’t have that and that is actually an asset for me being in this role. I like to think that it I like to think that it helps me to communicate with other patients better”
The last six months have been a steep learning curve for Sam. She has found the Charities Research Involvement Group of other PPI professionals have been hugely supportive. She is also finding AI is helping her get her head around some of the research jargon she now has to contend with. Indeed her top tip for researchers wanting to do more patient involvement is to write more clearly!
Sam has also found that her digital marketing skills are hugely valuable and is brimming with ideas to improve patient engagement and raise awareness of bowel health.
“The cancer community on Twitter has exploded a little bit. Thinking back to 2010 when I was first diagnosed, that resource wasn’t really there. Or if it was, I certainly didn’t know how to look for it.”
Getting comfortable with the uncomfortable
Her enthusiasm for breaking the stigma of talking about bowel problems led Sam to volunteer to be interviewed as part of last year’s #Auguts campaign. This award-winning social media campaign encourages people to share their stories and ‘Get comfortable with the uncomfortable’.
If I had medals for bravery I’d happily award one to Sam! You can watch her video below and look out for the 2023 campaign during August.
Find out more
- Connect with Sam @writersamr on Twitter, Instagram, Threads or visit her personal website
- Find out more Bowel Research UK
- Find out about the #Auguts campaign
- Learn about the Shared Learning Group on Involvement (SLG) /Charities Research Involvement Group (CRIG)
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