James Lind Alliance Pressure Ulcer Partnership (JLAPUP)

 

What do we need to know in order to improve prevention and treatment of pressure ulcers (bed sores)?

What are the questions about pressure ulcer prevention and treatment that matter most to patients, carers and clinicians?

We think it is vital that any further research into the prevention and treatment of pressure ulcers should focus on questions that are important to people with, or at risk of pressure ulcers, the people who care for them and the health professionals (doctors and nurses) who treat and help prevent these ulcers.

The story so far

Earlier this year we asked patients, carers and healthcare professionals where they would like to see further research or where they thought there was uncertainty about the best medical and nursing care.  We gathered nearly 1,000 questions about pressure ulcer prevention and treatment.  A quarter of these were non-intervention questions (for example the biology of pressure ulcers, how they are distributed through the population, environmental factors and so on) and we will report on these questions separately.  Three quarters were about what works in pressure ulcers treatment and prevention.  We sorted and categorised these questions and checked to see where existing research already provides a reliable and complete answer.  All intervention questions without a reliable or complete answer and where further research is called for, are being published on NHS Evidence in the UK Database of Uncertainties about the Effects of Treatments (DUETs) http://www.library.nhs.uk/duets/

From a list of the most frequently asked questions, we then asked patients, carers and health professionals to rate the most important questions of further research (survey closed on 5th November 2012).  We are now analysing the results.

Prioritisation

Online and paper surveys were launched on 1st October 2012 and ran until 5th November 2012.  Participants were asked to rate questions according to importance using a 10-point scale.  Thanks is due to all those who took part or promoted the survey.

141 people took part in the prioritisation survey.  There was a lot of agreement between patients, carers and health professionals about a core of topics that they felt should be researched but a lack of agreement outside that.

Integration

During the integration phase we looked at the differences and similarities between patients', carers' and health professionals' views in order to build a picture of the types of questions that all groups see as a priority for research. The views of those who are older and in care homes have been underrepresented so far so we have taken shortlisted questions out to people for home/bedside discussion.

Final Priority Setting Meeting

On Thursday 28th March 2013 27 patients, carers and health professionals came together at Shine, in Leeds to choose their top pressure ulcer prevention and treatment research questions from a shortlist of the 30 most highly rated questions submitted and rated by over five hundred stakeholders in all. A full day of debate, discussion and hard choices in workshop groups and a final plenary session led to the selection of the top 12. Follow the link to read the top 12.

Katherine Cowan explains the history and purpose of James Lind Alliance Partnerships at http://www.youtube.com/watch?v=6_pMgpk9on0&feature-youtu.be

What Next

Further wounds research

Partners from the JLAPUP are hoping to build on this work in a number of ways, subject to funding, including:

  • Doing further work in pressure ulcer priority setting that combines participative, deliberative processes with value of information approaches.
  • Developing a leg ulcer priority setting partnership.
  • Having more members of the public with direct experience of chronic wounds involved in developing and helping run new research projects.

Leg Ulcer Priority Setting Partnership

Partners from the James Lind Alliance Pressure Ulcer Priority Setting Partnership are hoping to establish a new partnership to find the questions about leg ulcer prevention and treatment that matter most to patients, carers and health professionals so that future research can focus on the most important questions. To be kept informed of developments and ways of becoming involved please contact : Richard Morley, Project Support Officer, Wounds Group, Room A/TB/130, Area 2, Department of Health Sciences, Seebohm Rowntree Building, University of York, Heslington, YO10 5DD. Telephone 01904 321105 or email richard.morley@york.ac.uk.

Information will be held in accordance with the Data Protection Act 1988 and only used for the purpose for which it was given and will never be revealed or passed to another agency outside the Universities of York and Manchester.

The MS Society is leading a project to put people with MS at the centre of setting research priorities. It is crucial that research into MS answers the questions that are most important to people affected by MS. This project aims to find the top 10 unanswered questions in MS research. For more information and to get involved http://www.mssociety.org.uk/ms-research/how-we-decide-what-we-fund/Setting-MS-research-priorities. 

News

  • Read our May 2013 press release (MS Word , 23kb).
  • JLAPUP Active Partner and Supporter Newsletter April 2013 (PDF , 819kb)
  • 12 is the new 10! Full details of the top twelve priority research questions agreed by patients, carers and health professionals at our final priority setting meeting will be released soon.
  • MHRA is consulting on the European Commission's proposals for new regulations on medical devices to replace the European legislation currently in place. They have now published their analysis of the evidence which they received from stakeholders (over 100 responses from healthcare professionals, industry, individuals, and charities). They have set out the key points which stakeholders raised and indicated how this evidence changes or informs the UK Government's policy. You can read the analysis on their website at: http://www.mhra.gov.uk/Publications/Consultations/Deviceconsultations/CON205361
  • Proritisation survey (5 November 2012) now closed - more details will be published shortly
  • The JLAPUP recently made a response to the NICE Pressure Ulcer Scope.  Read  NICE's response to the consultation (PDF , 539kb) 
  • see our October press release
  • Are you affected by pressure ulcers?  If so, can you spare a day to help influence the future of pressure ulcer research?  On 28th March 2013, patients, carers and health professionals will gather at Shine community building in Leeds to work together to choose from a shortlist 10 prevention and 10 treatment questions that will influence the future of pressure ulcer research.  We are looking for people at risk of pressure ulcers and their carers as well as health professionals to help in this important task.  Travel expenses are payable.  For more information on how you can be part of this exciting day, please ring Richard Morley on 01904 321105 or email richard.morley@york.ac.uk.

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