Research User Group Newsletter Keele University RUG Spring / Summer edition | Page 21

“And whilst everyone had a name badge, I wasn’t
really sure who were the clinicians, the academics
and the patients.  I went sheepishly over to the
organiser: ‘How do I know how to address
people?’ I asked.  And she responded, with a warm
smile, that everyone was on first name terms and
that everyone in the room was in it together. 
“I did a lot of listening and said ‘what does that
mean?’ more times than I care to remember. But
at one point, one of the people in the room said
‘What do you think, Magda?’ and that was an
amazing, empowering feeling. All these clever,
intelligent, articulate people were asking ME for
my opinion. And having lived for years with my
condition, day-in, day-out, facing set-backs,
successes, sleepless nights, frustrations, I wasn’t
short of insights or views.  
“What I considered to be throwaway comments
seemed to stimulate heated discussion and
debate. Simple things like suggesting a venue with
lots of disabled parking and not scheduling
meetings first thing in the morning, as well as
strategies for encouraging people to be involved,
were all taken on board and included. I was
hooked: I wanted to become more involved,
especially as I saw how my comments began to
shape not only the kind of research that was being
done but also the way in which the research was
being designed. The researchers were really keen
to ask me what I thought, how I would explain
things to other people, and whether what they
were planning on doing was relevant to me. The
whole experience was enlightening: I learnt so
much but at the same time, I could see that my
humble input was really valued.
Magda pictured with several members of the LINK group -
Lay Involvement in Knowledge Mobilisation
“I’m incredibly passionate about the work I do in
public involvement. I’m proud that I live in a country
where healthcare is free at the point of delivery, and I
want to be part of the research that makes the
healthcare provision the best it can be.  I like to give
my time and share my experiences: it’s my way of
giving bac k and expressing my gratitude for the
fantastic care I receive. I’m very privileged to work
with incredibly skilled and experienced academics,
but I’m also not afraid to tell them when they might
be misguided (and it took me a while to build the
confidence to do that!)  
“Part of the public involvement work I do is at Keele
University as part of the LINK group. The LINK group
uses ‘patient power’ to implement research. I was
shocked to learn that it takes an average of 17 years
for research evidence to be translated into practice,
so the LINK group are using patients to think of
innovative strategies to get that research evidence
into practice more quickly.  We’ve already done a few
projects, and one I worked on gave patients practical
advice on how to manage osteoarthritis based on
world-leading research.  
"All these clever people
wanted MY opinion - that
was pretty empowering"
“Public Involvement is hard-work, but also incredibly
rewarding. With several chronic conditions, unless
there is a silver bullet out there, I’ll continue to
access healthcare and have more experiences to
contribute. I’m no shrinking violet, but there’s room
for everyone at the public involvement table. My
experience is that researchers are very keen to work
together with patients because they understand that
by working together, the research has a much
greater chance of success. For me, public
involvement is something I do that helps me deal
with my conditions: whilst sometimes my
experiences of living with a condition are hard, I am
confident that through my public involvement work,
something good can come of it.  And that can only be
a good thing.”
SPOTLIGHT ON IMPLEMENTATION
21