On Tuesday I attended the “
Ask the experts” conference organised by
Target Ovarian Cancer.
Topics covered:
- Familial risk of
ovarian cancer
- Improvements in
diagnosis of ovarian cancer
- Advances in
surgery
- Targeted
treatments
- Public policy
- The role of a Research Advocate
- Living well with
ovarian cancer
- The Target
Ovarian Cancer Research Programme
I learned a lot form all the talks, however, I found the
following sessions particularly interesting:
LIVING WELL WITH OVARIAN CANCER
According to
PennyBrohn UK this is not rocket science. There are very easy things you can do
to
boost your immune system and live better, whether you suffer from cancer or
not:
- Manage your
levels of stress
Below is a
picture of the ideal Penny Brohn’s healthy eating plate. Note its particular
features:
- Plant
based with some animal products
THE ROLE OF A RESEARCH ADVOCATE
This scheme relies on volunteers with a non-medical
background and a connection with ovarian cancer who advice on research and “translate”
it into plain English. Some of the activities of a research advocate are:
- Review research grant applications: help to shortlist the
best candidates by becoming “lay reviewers”, and see the outputs of
successfully funded projects at universities like Oxford and Cambridge.
- Review projects: make sure projects are commented in lay
terms. For example the ROCkeTS (Refining
Ovarian Cancer Test Accuracy Scores) project led by
the University of Birmingham, intended to improve diagnosis of ovarian cancer.
The last part of this conference was about
Target Ovarian Cancer’s RESEARCH PROGRAMME highlighting some of the projects they fund. The topics were absolutely
fascinating but the presentations were not at all tailored for the general
public.
I felt really sad when this lady turned to me and said “I
didn’t understand anything”. It was not surprising when during one of the talks
one member of the audience actually interrupted the speaker to say “I don’t
understand what you mean by overexpression“.
I am a scientist, and during some of these talks I felt like
I was in a scientific conference! The slides showed figures that would
belong in a science paper with terminology that non-scientists would not
understand.
I know how challenging it is to translate research into
plain English, but PLEASE, make an
effort! How frustrating it must be for people connected with cancer when
they go to events like this, hoping to learn about the new treatments and
leaving baffled and confused.
So I’d like to take this opportunity to urge all the SCIENTISTS out there to DROP THE JARGON!
USEFUL LINKS
Participate in
The BRCA protect Research Clinic. This programme, run by
UCL, is trying to overcome the need of surgery by finding new ways of preventing breast and
ovarian cancer.
Find if you
have increased cancer risk in your family with the Cancer Genetics app developed by Guy’s and St Thomas’ NHS Foundation Trust.
Take part in the Target Ovarian Cancer
Pathfinder 2016survey, campaigning for increased awareness, higher survival and better
funding for ovarian cancer. Open for women with ovarian cancer, clinical nurses
caring for women with ovarian cancer, and family and friends of women with
ovarian cancer.
Visit the
Penny Brohn UK website to get information about their services and
courses.
Read
Justin’s blog post to find out what being a Research Advocate is
like and how you can become one.