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.
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). More information about non-intervention questions can be found here . 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) www.library.nhs.uk/duets/SearchResults.aspx?tabID=294&catID=15594.
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).
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.
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.
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.
We are now in the process of recording and publishing our work. Details of publications will appear in the news section.
On 18th June 2013 members of the JLAPUP took part in an online meeting with staff from NIHR Evaluation, Trials and Studies Coordinating Centre (NETSCC) to discuss ways of commissioning research to answer uncertainties arising from the JLAPUP’s Top 12. Updates on progress from this meeting will be found in the news section.
Katherine Cowan explains the history and purpose of James Lind Alliance Partnerships at http://www.youtube.com/watch?v=6_pMgpk9on0&feature-youtu.be
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.