I got into patient involvement in research about 20 years ago now
by accident, I got cancer.
It's really important for patients, carers, anyone affected by cancer to get involved with cancer research
There are several reasons for it the most obvious one is it's our disease
We're the ones on the receiving end we're the ones coping with it, either
ourselves or we're watching someone we love cope with it
So any research has got to benefit us otherwise there's really no point in doing it
So it makes sense logically to involve us in helping to shape, form, design, deliver that
research and then actually promote the findings so it does benefit patients
LSHTM collaborates with people affected by cancer in a variety of ways
one of the main ways is our long term relationship with patients and their
carers on our advisory panels and that really helps to set the direction of
work going forward. We also ask them to comment on research proposals as they go
for applications, but also we have special events where we bring patients
and carers in to talk to our researchers and to give the researchers immediate
feedback on the kinds of projects that they're planning. It's really valuable
for researchers to work with patients because we deal with secondary data
generally speaking, which means it's been routinely collected not from patients
themselves and we really need that understanding of what perspectives
patients have what they feel is important in research.
LSHTM has got a great variety of work on cancer research going on at the moment
everything from the global surveillance of cancer survival trends to looking at
health system factors that impact international variation in cancer.
We also have researchers looking at the performance metrics to help improve
quality of cancer care and looking at electronic health records to establish
the kinds of long-term outcomes for cancer patients and there's a big focus
on the inequalities of cancer survival and how to reduce those both within
countries and across countries.
So the work that the London School of Hygiene & Tropical Medicine does analyzing diseases in populations
is absolutely vital to actually us understanding the world in which we all live
we are all part of larger groups.
There's a more interesting thing about LSHTM
and cancer though and that's the work they've been doing on survival which is
actually global work it's not just the UK its global but actually comparing
those nations with each other and just discovering it's not just different
mortality rates but actually different survival rates different lengths of
survival and that makes you start asking questions about why - why do some people
get it not get it why do some people live longer not longer and on the one
hand the biologists can investigate the genome and what's going on inside our
bodies, but if you look at large groups of people you're suddenly looking at
factors that affect whole populations.
So I think some of the big priorities for
cancer research moving forward are to look in more detail and what underlies
the inequalities that we've really seen persisting in cancer survival over the
last few decades and for that we can use electronic health records but also the
cancer registry data and the new techniques that we've got for
investigating those large sets of data are going to be really important
Which by the way is another reason why people should not opt-out of donating their
data we need as much as we can get to help as many people as we can.