I have been part of the Research Advocate group since its inception in 2012/2013.
I originally got involved with Target Ovarian Cancer in 2011 when my brother and I did a London-to Brighton bike ride. Our mum wanted us to raise money for Target Ovarian Cancer – she had been volunteering with the charity after receiving that all too typical, sudden and unexpected diagnosis in 2005 with Stage 3 cancer on her fallopian tubes, which was found only as part of a routine removal of a benign cyst in her abdomen.
She sadly passed away just a few days after we completed the ride.
I wanted to do something as meaningful as possible in her name, and becoming a Research Advocate is absolutely that thing. I believe that the small part I play by giving my time will make a difference.
The Research Advocates programme adds a layer of independent thought and consideration to some of the key areas that Target Ovarian Cancer is involved in. I’m not medical in any way, but a Project Manager for. But that’s the point - we’re lay people, almost just another passer-by, but with different experiences. We have seen or experienced first-hand the effects of the disease, so we have a different perspective different from that of the incredible clinicians who are involved in the hunt for better diagnoses and treatments.
What do research advocates do?
First, lay review of research grant applications. I have been involved in two separate funding rounds and I think my professional life adds a dimension to my thought process as well as my personal experience.
From my initial read and review, I give my comments in order to help them form a view of the best candidates to be shortlisted. Once those are selected, we meet or have a conference call with key individuals such as Chief Executive Annwen and the Scientific Advisory Board. This is very much a round-table discussion where all views and opinions are treated with equal importance. The science may be amazing but the effect it has on the individual could possibly be lost and the lay reviewers are likely to raise that viewpoint. Each member of the review panel is given equal weight in decision-making. The key here is that patient outcomes and quality of life are fundamental to any decision and our experience as lay-reviewers is a vital input to that.
I have also visited successfully funded projects both in Oxford and Cambridge to see the winning applications. This helps to understand (where the science isnt impenetrable!) what advances are being made, and gives me a little more understanding of the disease in all its forms.
The second thing we do is to provide feedback and proof reading for documentation being prepared for independent studies in effect, adding the human touch. On occasion, study leads will approach Target Ovarian Cancer knowing that they may be able to use the invaluable additional resource provided by the Research Advocates.
Lastly, and most recently, we were invited to review and discuss Target Ovarian Cancer’s research strategy – to ask is it still right and relevant? Is a change in direction required? It was to try and understand whether the hard-earned sponsorship and bucket rattling on a cold winter morning could or should be differently spent.
I can’t think of a better way to give my time than being a Research Advocate and I’d recommend it to anyone. If you would like to get involved, please do get in touch with team at Target Ovarian cancer to see how you can.