FOURTEENTH ANNUAL EUROPEAN PRESSURE ULCER ...

Thursday September 1st
Proceedings of the 14th Annual European Pressure Ulcer Meeting
Oporto, Portugal
A Different Type of Expertise; patient and public involvement in pressure ulcer research
Introduction
Recent healthcare reforms in the UK have pushed for
a more patient centred National Health Service (NHS),
where pateints play a central role in their own care and
have more choice about the services they use.
Patients and carers are increasingly being recognised
as experts by experience as they live with conditions
on a day to day basis. This cultural change is being
reflected in healthcare research. Patient and Public
Involvement (PPI) in research is widespread in the UK
and researchers are now required to demonstrate
active PPI at all stages in the research process.
INVOLVE, the Department of Health funded PPI
advisorary body, describe 3 levels of involvement,
Consultation: Seeking people’s views and ideas and
using these to inform decision making.
Collaboration: Active, ongoing partnership in which
patients and the public are involved in the research
process.
User control: People who use services are in charge
of the research.
Many funding bodies now require researchers to
demonstrate a minimum level of PPI as early as the
grant application stage.
PPI is a growing field and involvement in pressure
ulcer research is perhaps less developed in
comparission to other areas. This is partly due to the
lack of existing patient groups or charities with a
pressure ulcer focus. Also the complex needs and comorbidities
which much of the pressure ulcer
population experience makes recruiting and supporting
people challenging.
Methods
To combat this, the Leeds Clinical Trials Research
Unit (CTRU) have brought together patients, carers
and family members with personal experience of the
prevention or treatment of pressure ulcers to form a
network. This is known as the UK Pressure Ulcer
Research Service User Network (PURSUN).
We have taken a flexible, asset based approach to
involvement which allows network members to take on
varying roles depending on their skills, needs and the
level of commitment they feel able to give.
Network members are prepared and supported by a
dedicated PPI officer. Preparation includes a series of
Delia Muir 1* , Jane Nixon 2
1* University of Leeds, UK, d.p.muir@leeds.ac.uk
2 University of Leeds, UK
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workshops based on the Patient Learning Journey
Model [1].
The structure and terms of reference for the network
have been developed collaboratively with network
members.
Results
Members of PURSUN are now actively involved in
pressure ulcer research at CTRU and beyond. So far
their activities have included:
• Contributing to the development of a new clinical
trial, including one member being a co-applicant.
• Sitting on the Pressure Ulcer Programme of
Research (PURPOSE) steering committee and
sub groups.
• Contributing to the development of a Pressure
Ulcer Minimum Data Set (PUMDS) and Risk
Assessment Framework (PURAF)
• Helping to develop a patient focused website
Discussion
Members of PURSUN have been able to use their
personal experiences of living with pressure ulcers and
accessing healthcare to inform research. This is
something which researchers have found very usuful.
By working in partnership with academics and
clinicians network members bring a different and
valuable perspective to the research process. This can
help to ensure that research is grounded in real world
experineces and is relevenat to the people it is
ultimately aiming to benefit.
Clinical relevance
PPI in pressure ulcer research can help to ensure that
research is relevant to the public and has an impact in
the clinical environment.
Acknowledgements
We would like to acknowledge all members of the
PURSUN network and the PURPOSE project team.
Conflict of Interest
None
References
[1] Morris P, Dalton E, McGoverin A and Symons J.
Preparing for patient-centred practice: developing the
patient voice in health professional learning, In:
Bradbury H, Frost N, Kilminster S, Zukas M. Beyond
Reflective Practice, Routledge, Oxford, 2009.
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