Research User Group Newsletter Keele University RUG Summer newsletter 2018 | Page 29

EULAR 2018
Showcasing Patient Involvement in
Amsterdam
Members of the Patient and Public Involvement
and Engagement team had the opportunity
to showcase the team’s work in front of an
international audience recently, when they were
selected to deliver oral presentations on behalf of
the PPIE and Impact Accelerator Unit (IAU) teams
at the European League Against Rheumatism
(EULAR) congress 2018, Amsterdam. Adele is a EULAR Patient Research Partner
which involves reviewing lay summaries and
condition specific EULAR recommendations.
Along with Krysia Dziedzic, Adele Higginbottom
and Laura Campbell flew to Amsterdam to talk
about how Patient Involvement at the iPCHS has
grown and developed over the last few years. These challenges have included getting lay
appropriate and relevant information to RUG
members before they take on the role of a
co-applicant. To resolve this, the PPIE team
recommends early meetings with researchers
to discuss and agree roles, and highlighting
specific paragraphs in protocols for lay review.
Training, good communication between RUG
members and study teams, and information
guides for RUG members and TSC Chairs are
also beneficial.
Adele’s presentation, entitled ‘Addressing Key
Challenges of Lay Involvement in Musculoskeletal
Research: Co-applicants and Trial Steering
Committees’ was part of the PARE (People with
Arthritis/ Rheumatism across Europe) abstract
session.
EULAR PARE gathers representatives of
rheumatic and musculoskeletal user groups
around Europe to work together towards
improving the quality of life for the 120 million
people in Europe living with rheumatic
musculoskeletal diseases (RMDs).
Adele spoke about the challenges we face
involving some of the iPCHS’s 117 RUG members
as members of Trial Steering Committees and as
co-applicants.
Laura’s presentation, entitled ‘A Partnership
in Implementation: Adapting an Osteoarthritis
Guidebook Across European Cultures – with
patients, for patients,’ was part of the PARE
session ‘What’s new: Latest Advances in
Treatment in Juvenile Idiopathic Arthritis and
Osteoarthritis.’
Patient involvement in the JIGSAW-E
project (improving osteoarthritis care for
adults across Europe) has helped to keep
it patient focussed, encouraged a different
way of thinking, sparked creativity and
maintained momentum. The audience
were interested to learn that one of the key
successes of JIGSAW-E is that patients in
the Netherlands, Denmark, Norway and
Portugal, as well as the UK, now have
access to high quality evidence based
patient information to help them to self-
manage their osteoarthritis.