Research User Group Newsletter Keele University RUG Summer newsletter 2018 | Page 8

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NEWS
RESEARCH USER GROUP
UPDATE FROM THE RESEARCH DESIGN SERVICE
PILAR (Public Involvement and Lay Accountability in Research and Innovation)
Working Together Across the Region
Public Involvement and Lay Accountability in
Research and Innovation (PILAR) is a regional
network comprising lay and professional
members leading on sharing good practice
for public involvement across the West
Midlands eg. from the Research Design Service.
We developed our own Pledge setting achievable
objectives for the future:
1. To improve the ways in which the public can
learn about and become involved in research
2. To provide leadership to encourage adoption
of national standards
3. To improve the diversity and inclusiveness
of public involvement
The network was mentioned in the INVOLVE report
on regional networks and has input into the National
Institute of Health Research National Standards for
Patient and Public Involvement and Engagement. It
held a ‘Working Better Together’ conference in 2016
during which attendee’s identified regional priorities
to be fed back into the pledge.
Following feedback from this event we are
now constructing our website and have held a
teleconference ‘Identifying and Sharing Learning
and Development opportunities’ looking at linking
with existing resources in the region.
Our future goal is to work on Pledge 3: Improving
the diversity and inclusiveness of public
involvement, a common yet challenging issue for
many organisations across the region and the
country. We believe our efforts have shown that
working together at a regional level can really
help to shape better public involvement in health
research, service and innovation.
UPDATE FROM
Improving Diversity
of Public Involvement
Steven Blackburn has
been supporting a new
project through the
Research Design Service
(West Midlands) called
‘Student Link’.
The project has been funded by Keele University Innovation Fund to
engage with the student population from different communities, in an
effort to develop patient and public involvement champions to link with
black and minority communities outside of the University.
To raise awareness of this and drive engagement, we are planning a
student engagement event and exhibition in Spring 2018 as part of
Keele Communities Together event to provide more information about
the importance of the project.
Consultations in Primary
Care Archive (CIPCA)
Robert our PPIE Team Volunteer has
been asked to join the Centres CIPCA
Academic Custodianship Committee
as the Lay Representative helping
to add a patient perspective to their
important work in reviewing research
applications to access the Database.
The Research Institute for Primary Care and
Health sciences [iPCHS] at Keele University
have extensive experience in using
anonymised Electronic Health Records (EHR)
in their research.
These electronic health records of general
practices contain routinely recorded information
on pati ent contacts with the practises including
the symptoms and illnesses presented to the
GP and the management of these problems
over time (for example prescriptions, referrals
to secondary care and investigations). Keele
University has built a strong relationship over
many years with the local GP practices that
contribute to CIPCA.
These EHR therefore present a unique
opportunity to investigate the long term course
of disease using large unselected groups
of patients. Analysis of this data on large
populations over many years is invaluable for
researchers to inform their trials, showing trends
over time in many areas of illnesses giving
invaluable information on their risk factors, its
management and prognosis etc.
Robert says,
“The valuable
insight this data can
give researchers in
their aims to seek
answers or ask
possible important
new questions
to improving
healthcare for the
public can only be
applauded.”
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