Priority setting exercise in faecal incontinence

Background

We are funding a project that invites consumers, health care professionals and healthcare policy makers to share their ideas for future research topics in the area of faecal incontinence. The project will be run in an iterative process through a survey and an online workshop to gather and refine a broad range of identified topics into ranked list which are of international importance. These will guide decision making for Cochrane Incontinence over the next five years as we plan further systematic reviews. Gathering information in this way makes sure we are focusing on publishing research in areas that are meaningful and important to patients and their caregivers.

Aim

To identify a list of priority topics of interest to the main stakeholders within the faecal incontinence field and rank them according to their relevance. 

Volunteer Criteria

We are seeking males and females over the age of 18 who have experience of managing and/or living with faecal incontinence. We are particularly looking for volunteers who fall into one (or more) of the following criteria: 

  • Adults who have faecal incontinence.
  • Parents, legal guardians or carers of children or adults who have faecal incontinence.
  • Clinicians or allied healthcare professionals who have experience treating or managing faecal incontinence symptoms.
  • Guideline developers or policy makers who are involved in collaborative decision making informing the interventions available for faecal incontinence.
  • Commissioners involved in assessing need for, planning and prioritising, purchasing and monitoring faecal incontinence health services.
  • Researchers active within the field of faecal incontinence.

Organisations involved in delivering the project

We will fund and oversee the project that will be delivered collaboratively by the Evidence Synthesis Group based at Newcastle University and NIHR Innovation Observatory (NIHR-IO). A steering committee comprised of members from the Cochrane Incontinence editorial base and specialist academics will provide governance to the project.

Steering Committee members

  • Donna Bliss (Professor and School of Nursing Foundation Professor of Nursing Research, University of Minnesota)
  • Lynne Corner (Professor of practice for engagement, Newcastle University)
  • Dawn Craig (Professor of Practice in Evidence Synthesis, Newcastle University)
  • Lindsey Elstub (Managing Editor, Cochrane Incontinence)
  • Eugenie Johnson (Assistant Managing Editor, Cochrane Incontinence)
  • Nicole O’Connor (Assistant Managing Editor, Cochrane Incontinence)
  • Fiona Pearson (Senior Research Associate, Newcastle University)
  • Katie Thomson (Research Associate, Newcastle University)
  • Luke Vale (Co-ordinating Editor, Cochrane Incontinence)
  • Sheila Wallace (Information Specialist, Cochrane Incontinence)

Priority-setting project stages

Survey

During the first stage, a short survey will be internationally disseminated through social media, patient advocacy groups and professional networks. The survey will capture a broad range of perspectives and experiences on what areas people feel would benefit from further research to help improve the management and, or, symptoms of faecal incontinence. The project team will collate this information and try to identify common themes. They will then map these against faecal incontinence topics identified by the 6th International Consultation on Incontinence alongside existing (and planned) research evidence.

The survey should take no longer than 10-15 minutes to complete, and can be found here (the survey closes 31st August 2020).

Evidence synthesis

Following from the survey, we will undertake a variety of evidence gathering approaches to:

  • Understand which review articles relevant to faecal incontinence are the most viewed within the Cochrane Incontinence portfolio;
  • Identify existing systematic reviews to identify research gaps and unmet need;
  • Apply horizon scanning techniques to identify up and coming clinical trials that could potentially address unmet needs.

Workshop

30 participants who have expressed an interest (see link below) will be invited to take part in one of two online workshops. The workshops, lasting no more than 3 hours, will ask people to look at the results from the survey and evidence synthesis in order to refine which areas should be considered priority topics for faecal incontinence. This process will be guided by skilled facilitators and use the validated SPARK Tool.

Click here to express an interest in taking part in the online workshops scheduled to take place in September/October 2020

When and where will the results be made available?

A final project report will be made available on the Cochrane Incontinence and NIHR-IO website by December 2020. An academic publication will also be developed, detailing the priority setting approach followed and the results. This will be made open access and freely accessible to members of the Cochrane network upon publication.

Full protocol available here.