Research User Group Newsletter Keele University RUG Summer newsletter 2018 | Page 6

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NEWS
NEWS
European League Against
Rheumatism Conference
This 2017 European League against Rheumatism (EULAR) conference was held in
Madrid Spain from 13th to 15th June. Every year representatives from research and
patient organisations in Europe pull together for four days of conference sessions.
These include a combination of research presentations on the latest treatments for
rheumatic diseases and patients’ personal experiences of living with these conditions.
PPIE team presentation
A poster designed by Adele Higginbottom and Laura
Campbell entitled “Celebrating ten years of patient
involvement in research of inflammatory conditions”
was accepted to be shown at the PARE sessions
(the patient and public involvement sessions of the
EULAR conference).
The poster showcases two case studies of RUG
involvement; one in a gout study and the other a
rheumatoid arthritis with anxiety and depression study.
Adele and Laura were delighted to present the poster to
around 20 delegates.
JIGSAW-E Community
of Practice Meeting
The conference also provided an opportunity for the
JIGSAW-E project’s Community of Practice to meet
with project partners from around Europe. Members of
the Keele team organised a meeting in Madrid for all
partners to discuss their progress so far. The Impact
Accelerator Unit at Primary Care Sciences in Keele
have been working with Denmark, the Netherlands,
Portugal and Norway to roll out a model osteoarthritis
consultation, which includes the osteoarthritis
guidebook.
The guidebook was co-produced by patients in the
Research User Group (RUG). This implementation
project has had strong patient involvement in the form
of two Patient Champions from the RUG group, the
steer of the LINK group and input from the PPIE team.
“This
implementation
project has had
strong patient
involvement in the
form of two Patient
Champions from
the RUG group...”
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Learning from others
Carol summarised the lay
conference for Allied Health
Professionals.
Our representatives attended
many of the patient sessions
during the week and learnt a
great deal from the different
presentations.
A poster tour covered the clever
design of an interactive story
book for children diagnosed with
Juvenile Arthritis – helping them
talk to their families, teachers
and doctors about how their
illness affects their life. Another
covered the challenges faced
by young people in Italy moving
from paediatric care to an adult
care system and the work of
European networks to raise
awareness amongst employers
around work and education for
young people with Arthritis.
Sessions highlighted how
patient organisations reach out
to minority groups, particularly
those from ethnic backgrounds,
on how they view their
medication. One discussed how
to manage the apprehension for
patients when they are changed
from their usual drugs to a
biosimilar version as countries
strive to maintain affordable
healthcare.
Finally, they covered the value
volunteers bring to small
charities in helping them to
support people in managing
the mental and emotional side
of living with pain, fatigue and
flares in their condition.
All of these examples highlight
and celebrate the importance of
patient and public involvement
in developing how conditions
are treated and considered in
research.