This document sets out the terms of reference for the steering group of the James Lind Alliance Pregnancy and Childbirth Priority Setting Partnership (MPC – PSP) in Uganda. The steering group leads the Priority Setting Partnership (PSP) and organises its activities.
The background, aims and responsibilities of the PSP are set out in our protocol and at a later date the details about the PSP will be available at the James Lind Alliance (JLA) website.
Membership of the steering group
Steering group membership includes women that have experienced maternity, pregnancy, childbirth and related complications. It will also include carers of these women as well as clinicians/health workers that offer specialised care or social support to these women. A JLA staff will be a member of this group, too. Professionals working with selected organisations that deal with maternity, pregnancy, childbirth within the area of the PSP will be represented on steering group.
Steering group members bring with them knowledge and expertise of maternity, pregnancy, childbirth and related complications. They also possess an understanding and dynamics of how to access the networks of patients, carers and health workers in this region.
Members will need to be fully engaged in the process and have the time to carry out the work involved.
It is agreed that for the PSP, three (03) patient/carer representatives and three (03) healthcare professionals will need to be present in order for steering group meetings to go ahead and for decisions to be made (quorum).
One academic will be included as a member of the steering group to provide insights on the scientific aspects of the PSP process. However, an independent JLA Advisor will ensure that there is no undue influence on the outcome.
Role of steering group members
Steering group members are asked to contribute their expertise and time. The will be a linkage between the PSP team and their established contacts / networks.
All Steering Group members are asked to commit to working according to the JLA principles:
- Inclusivity: working with other members respectfully and constructively and ensuring that the full range of patients, carers and clinical stakeholders are involved in the PSP process
- Equality: Women, carers and health workers, and the knowledge and experience they bring, are of equal value to the PSP
- Fairness and transparency: declaring any personals interests, and ensuring decisions and activities are documented openly
- Evidence based: ensuring the work of the PSP recognises the existing knowledge based for maternity, pregnancy and childbirth and contributes to this through the PSP’s evidence checking and open publication of information from the PSP.
Members of the steering group will need to agree on the resources (including time and expertise) that they will contribute to ensure that each stage of the process is completed.
Tasks of the steering group members
Members of the steering group will:
- Publicise and participate in the initial awareness meeting about the project
- Support recruitment of further steering group members, if required
- Identify and publicise the Pregnancy and Childbirth Priority Setting Partnership in Uganda to potential partners.
- Take part in four (04) steering group meetings. These will be held face-to-face approximately monthly, and joined in by teleconference by some members unable to make to the meeting.
- If unable to attend, the member will submit comments ahead of the meeting or will be phone called by the co-chair to get their comments. Where a steering group member is unable to attend a meeting, decisions made at the meeting will be respected
- Respond promptly with feedback on project materials physically or virtually.
- Have oversight of the collection of evidence uncertainties from patients, carers, clinicians and existing literature
- Oversee and lend expertise to the data management process, including agreeing the scope and process for data-checking
- Have oversight of the interim priority setting stage
- Agree on the final shortlist of questions to be taken to the final priority setting workshop
- Oversee the planning for the final priority-setting workshop, and help to publicise it
- Ensure that the PSP’s working spread sheet of unanswered questions and the final prioritised list of questions are supplied to the JLA, for publication on the JLA website
- Help publicise the final top 10 uncertainties to the research community
- Be involved in the development of research questions from the agreed priorities, and work with research funders where necessary to provide any extra information they need.
Specific roles
Steering group chair: The Pregnancy and Childbirth Priority Setting Partnership in Uganda will be chaired by Dr. Jonathan Gower, a JLA Adviser. The JLA Adviser will chair and run the final priority-setting workshop in Mbale face to face. The JLA Adviser’s role is to support and guide the PSP, as a neutral facilitator, ensuring that the process is followed in a fair, transparent way, with equal input from patients, carers and clinicians and their representatives. The JLA adviser will attend/ facilitate these meetings either in person or by videoconferencing.
The academic chair: Professor Andrew Weeks is the operational lead for the PSP. He will work closely with the JLA Adviser and the local Co-chair to champion the initiative and ensure it is successfully promoted, completed and disseminated to funders.
The local Co-chair: Dr. Napyo Agnes will be responsible for the coordination and administration of the Pregnancy and Childbirth Priority Setting Partnership in Uganda. This includes
- Arranging all meetings and workshops, including the final priority workshop
- Consulting with the steering group chair and academic chair to agree on the agenda and papers for meetings
- Circulating the agenda and papers at least one week before meetings
- Taking minutes, and circulating these within two weeks once reviewed by the SG Chair
- Organising the survey design together as advised by the steering group
- Organising the communications for the PSP (which may be delegated to a communications lead)
- Will serve as the information specialist, advising on data management and analysis strategies and agree these with the group.
- Organising and analysing the unanswered questions that have been submitted to the PSP; takes the lead on developing summary questions; and reviews existing evidence to verify the
- Questions have not already been answered by research, supported by the University of Liverpool librarian.
- Involving the steering group in the assurance of this work and supporting the Steering Group to agree the long list of questions.
Level of involvement and resources
Steering group members are asked to contribute, at a minimum, their expertise and their time and to also demonstrate the following:
• An interest in the maternal, pregnancy and childbirth Priority Setting Partnership in Uganda and advocacy for the project’s outcomes
• An understanding of the approach being adopted
• Commitment to working with other members respectfully and constructively
• Participation in the monthly face to face meetings or joining in via teleconference
• Ready access to, and comfort with, email
• Prompt feedback on prioritisation materials
• Where appropriate, sharing of networks and contacts for membership of the PSP
• Participation in the one-day final priority setting workshop
Administration
The Sanyu Africa Research Institute will provide leadership and secretariat support throughout the Pregnancy and Childbirth Priority Setting Partnership in Uganda. This includes making arrangements for all meetings and workshops, and ensuring:
• Requests for agenda items are discussed with the group
• Documents are available at least one week before meetings
• Meeting notes are circulated within two weeks
Declaring interests
Steering group members are asked to declare any relevant interests relevant to the PSP, using the JLA template. The interests of each member will be shared among the group, 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.
Steering group members may use the form to indicate whether or not they wish their name and/or photograph to appear in any public domain in relation to the PSP.
Important timelines
The Pregnancy and Childbirth Priority Setting Partnership in Uganda key time lines will include the following
Date: Activity
17/07/2023: First Steering Group meeting.
04/01/2024: Second Steering Group meeting
TBC: Third Steering group meeting
TBC: Fourth Steering group meeting
July 2024: The final priority-setting workshop.
Key contacts
Local Co-chair:
Dr. Napyo Agnes,
napyoagnes@gmail.com
Tel: +256773657967
Please refer to the Pregnancy and Childbirth (Uganda) PSP protocol for details of the steering group members and their roles.