Pessary use for Prolapse PSP Terms of Reference

Introduction to the James Lind Alliance and priority setting

The James Lind Alliance (JLA) is a non-profit making initiative which was established in 2004 with the aim of enabling groups of patients, carers and clinicians to work together to agree priorities for health research. The JLA facilitates Priority Setting Partnerships (PSPs) in particular health areas.

Each PSP consists of those affected by the condition and their partners and representatives, and clinicians, and is led by a Steering Group. This collaboration to set a mutual research agenda is extremely rare, but vital in prioritising issues important to all parties and drawing them to the attention of research funders.

The role of this PSP is to identify questions about the use of pessaries in the treatment of pelvic organ prolapse (herein referred to as prolapse) which have not been answered by research to date, and prioritise them.

The first stage is a survey accessed online or as a paper copy by those affected by this topic, asking for unanswered questions about pessary use in the management of prolapse.

These questions will then be checked to ensure they are within the scope of the Pessary PSP and to verify them as true uncertainties. An interim prioritisation exercise then takes place to shortlist the uncertainties.

A final priority setting workshop takes place where those with direct personal experience of the topic debate the uncertainties and arrive at a Top 10 list of shared unanswered questions, which are most important to them.

The aim is then to turn these uncertainties into research questions which funding bodies will adopt and support by resourcing future research. Members of the Steering Group will work with researchers to help achieve this outcome.

All uncertainties are displayed on the JLA website. Further details about the JLA and PSPs are at http://www.jla.nihr.ac.uk/

The Pessary Priority Setting Partnership

The background and wider aims and responsibilities of the Pessary PSP are set out in the JLA Pessary PSP Protocol.

About the Steering Group

The Steering Group is responsible for overseeing and guiding the activity of the PSP. Drawing on members’ expertise and networks, the Steering Group will help encourage a wider membership into to PSP process and, where capacity permits, will carry out the practical work needed to collate the interim and final priority setting exercises. The Steering Group will also help raise awareness of the final Top 10 uncertainties to the research funders and beyond.

Membership of the Steering Group includes individuals and representatives of organisations who can reach and advocate for women with prolapse, and clinicians, as well as a JLA Adviser. Those Steering Group members with direct relevant experience of prolapse as a patient or healthcare professional are invited to participate in the final priority setting workshop.

Role of Pessary PSP Steering Group meetings

Steering Group members are asked to contribute, as a minimum, their expertise and their time. Steering Group members are asked to adhere to the following principles:

• an interest in the initiative and outcomes being pursued
• a broad understanding of project process and the approach being adopted
• a commitment to working with other members respectfully and constructively
• to actively promote the project’s outcomes

Steering Group members will:

• attend monthly telephone conference calls
• attend face to face meetings.
  
  • To be effective in its decision making, each meeting should include a representative of those represented in this PSP: clinicians, women with prolapse and researchers
  • It is agreed that for this Pessary PSP, 2 of the women with prolapse and 3 of the clinician representatives will need to be present in order for Steering Group meetings to go ahead and for decisions to be made
  • If unable to attend, members will submit comments ahead of the meeting
  • Decisions made at the meeting will be respected
• respond promptly with feedback on project materials by email or telephone
• share networks and contacts to promote wider membership of the PSP
• publicise the initiative to potential partner members to encourage them to join the PSP process which might include emailing contacts to invite them to participate or explaining what being involved will mean
• be involved in the collection of treatment uncertainties from relevant parties and existing literature if appropriate
• as a group oversee and lend expertise to the data management process, including agreeing the scope and process for data-checking
• have involvement in the interim priority setting stage
• verify the shortlisted questions to be taken to the final priority setting workshop
• participate in the final priority setting workshop (if job role qualifies them to do so )
  
  • This is a one day workshop event which brings women with prolapse and relevant healthcare professionals together to debate, rank and agree a final Top 10. Those not directly affected by prolapse or its treatment are not eligible to vote, but may help run the day
• be involved in the further development of the Top 10 Pessary use in Pelvic Organ Prolapse treatment uncertainties into research questions for funders
• work with relevant funding bodies to develop the priorities into research questions which can be answered by further research e.g. the National Institute for Health and Care Research Evaluation, Trials and Studies Coordinating Centre (NETSCC)

Declaring interests

Steering Group members are asked to declare any interests relevant to the Pessary PSP which will be listed and shared among the group. This is to encourage a culture of openness and transparency. Relevant interests may be professional, personal or related to an interest in or involvement in clinical research.

Pessary PSP Coordination

The PSP will be chaired by Catherine White, JLA Adviser.

Kate Lough, PhD researcher, is responsible for the coordination and administration of the PSP. This includes making arrangements for all meetings and workshops, and ensuring that:

• requests for agenda items are made to the group prior to any meeting
• papers are available at least a week before meetings
• meeting notes are circulated within two weeks for approval
• expenses incurred will be repaid at the earliest opportunity and ideally within 4 weeks.

Timescales

The Pessary PSP first Steering Group meeting will be on 23rd May 2016. We propose that the final meeting prioritisation takes place in September 2017

Key contacts

PSP Chair: Catherine White JLA adviser, catherineswhite@btopenworld.com
PSP Lead and Co-ordinator: Kate Lough, Doctoral student NMAHP RU, Glasgow Caledonian
University
katharine.lough@gcu.ac.uk
DL work: 0141 331 8063
Mob: 07952 562534