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Pressure Ulcer
A JLA Priority Setting Partnership

A partnership of patients, carers and clinicians to identify research priorities in the prevention and management of pressure ulcers

Pressure ulcers (pressure sores, bed sores, decubitus ulcers) are painful for patients and distressing for patients and carers. While an abundance of interventions is available for their treatment and management, evidence of the effectiveness of these interventions remains limited. Most treatments for pressure ulcers (and other chronic, complex wounds) are classified as devices rather than medicinal products. This means that manufacturers are only required to demonstrate safety and fitness for purpose and unlike medicines, devices are not automatically subject to a clinical trial. The evidence-base informing clinical decision making is therefore limited.

Pressure ulcer research is currently the sphere of a small group of experts funded by industry or the NHS. Public involvement in and awareness of wounds research is minimal. The role of people with pressure ulcers (and other chronic, complex wounds) is confined to, “being objects of study and beneficiaries of research results.” Given the lack of patient involvement in research agenda setting and the narrow evidence-base informing clinical decision making, the James Lind Alliance (JLA) is supporting the development of a partnership of patients, carers and clinicians to identify research priorities in the prevention and management of pressure ulcers. The objective is to discover the research questions that matter most to patients, carers and clinicians.

The National Institute for Health Research (NIHR) Wounds Research for Patient Benefit Programme (WRPB) is the initiating partner. (WRPB is a research initiative involving NHS Leeds Community Healthcare and the University of York. Full details are available at: http://www.york.ac.uk/healthsciences/wounds-patientbenefit/).

The JLA priority setting process works by bringing together organisations representing patients, carers and clinicians in consultation and collaboration across the United Kingdom. The JLA Pressure Ulcer Priority Setting Partnership must acknowledge two particular challenges:

1. A significant proportion of people with pressure ulcers find it difficult to participate in activities outside their homes due to age and co-morbidities;

2. There are no existing patient-led groups specifically representing the interests of people with (or at risk of) pressure ulcers.

Knowledge about the demographics and diversity of patients with pressure ulcers is limited, but we do know that this JLA partnership must develop an innovative strategy to produce meaningful patient, carer and clinician involvement in research agenda setting. It may be necessary to try more than one method and to vary methods between groups in order to develop an accurate understanding of the clinical uncertainties of patients, carers and clinicians.

For this reason it is proposed that the JLA pressure ulcer Priority Setting Partnership will use the Dialogue Model as a framework for research agenda setting. The Dialogue Model includes both consultative and deliberative methods and allows for emergent and flexible design.

For further information and to register your interest please use the following link: http://www.jlapressureulcerpartnership.co.uk/

An Introductory Meeting of the JLA Pressure Ulcer Priority Setting Partnership, was held at The National Science Learning Centre, University of York on 22nd March 2011. To see the agenda please click here

Partnership gives research voice to pressure ulcer patients - Press Release 15/09/11

Partnership gives a voice to pressure ulcer patients
A new survey is launched which aims to give patients and carers a voice in the search to find the most effective prevention and treatment for pressure ulcers. - Press Release 31/01/12

For further information or to take part in the survey visit www.jlapressureulcerpartnership.co.uk or contact Richard Morley on 01904 321105.