Vision Loss (Australia) PSP Steering Group Terms of Reference

  • Published: 19 October 2023
  • Version: V1.0
  • 5 min read

The Vision Loss (Australia) Priority Setting Partnership

This document sets out the Terms of Reference for the Steering Group of the James Lind Alliance (JLA) Vision Loss Priority Setting Partnership (PSP).

In line with JLA principles, this Steering Group will include representations of:

  • Adult patients
  • Carers
  • Clinicians
  • Researchers
  • Patient advocacy groups

These may be people with lived experience, members of a charity or professional, organisation or individual, health professionals within the area of the PSP. Members will bring with them knowledge of the condition, and understanding of the patient, carers and clinician populations and access to networks of patients, carers and clinicians.

Introduction to the James Lind Alliance and priority setting

The JLA is a non-profit making initiative which enables patients, carers and clinicians to work together to identify and agree priorities for research. The role of the PSP is to identify questions that have not been answered by research to date, and then to agree which of these are the most important.

Each PSP is led by a Steering Group who oversees the activities of the PSP and has responsibility for the activity and the outcomes of the PSP.

The aim of the PSP is to identify the most important areas of research to focus on, and to promote these to relevant funding bodies, researchers, and governments as priority areas to address.

Key Stages of the PSP

  • The initial stage of the PSP involves asking patients, carers and clinicians, via an online survey, for unanswered questions about the diagnosis and treatment of inherited retinal diseases (IRDs). These questions are then assessed to check they are in scope for the PSP and are checked to make sure they have not already been answered by research.
  • The next stage involves an interim prioritisation exercise where patients, carers and clinicians choose which unanswered questions are most important to them.
  • Finally, there is a priority setting workshop where patients, carers and clinicians discuss the most important questions and agree a list of the Top 10.

Membership of the Steering Group

The Steering Group will include ~12 members, including an equal representation of patients, carers, advocacy group/charity representatives, and healthcare professionals/researchers. The researchers leading the PSP (Dr Eden Robertson, Dr Kate Hetherington, Dr Anai Gonzalez-Cordero) will also join the Steering Group meetings, which will be chaired by the JLA Advisor (Dr Louise Dunford).

It is agreed that 50% of the patient/carer and advocacy group/charity representatives and 50% of the healthcare professionals/researchers will need to be present for meetings to be quorate.

Role of Steering Group Members

Group members are asked to contribute, as a minimum, their expertise and their time, and to be prepared to approach their established contacts and networks.

Steering Specifically, all Steering Group members will:

  • Take part in Steering Group online teleconferences, with an estimated 8 meetings to occur over 18 months. Proposed meeting dates:
    • 1st August 2023
    • 12th September 2023
    • 5th December 2023
    • 23rd January 2024
    • 5th March 2024
    • 16th April 2024
    • 18th June 2024
    • 6th August 2024
  • Inform the team if they are unable to attend the meeting as soon as possible.
  • Submit comments ahead of any meetings that they are unable to attend.
  • Respect decisions made at unattended meetings.
  • Publicise the PSP to potential partners. This includes advising on contacts for the PSP (to ensure a wide and representative group of patients, carers and clinicians) and emailing contacts to
  • invite them to participate.
  • Oversee and lend expertise to the data management process, including agreeing to management of questions defined as out-of-scope.
  • Have oversight of the collection of evidence uncertainties and interim priority setting.
  • Sign off the final shortlist of questions to be taken to the priority setting workshop.
  • Oversee the planning for the final priority setting workshops and help to publicise it.
    • These are two consecutive half-day workshops (held virtually) that brings patients, carers and clinicians together to debate, rank and agree a final Top 10.
  • Ensure that the PSP’s working spreadsheet of uncertainties and the final prioritised list of questions are supplied to the JLA, for publication on the JLA website.
  • 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.
  • Help publicise the final top 10 uncertainties to the research community.

Other Roles

Chair

The PSP will be chaired by Dr Louise Dunford, a JLA Adviser. The JLA Adviser also Chairs and runs the priority setting workshop. 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.

PSP Leader

Dr Eden Robertson is the lead for the PSP, ensuring that is successfully completed and disseminated to funders.

They will be responsible for the coordination and administration of the PSP. This includes arranging all meetings and workshops, and ensuring that:

  • agenda items are discussed with the group, or appropriately held over
  • papers/readings are available at least a week before meetings
  • meeting notes are reviewed by the Chair, circulated within two weeks, and reviewed and agreed at the next meeting.
  • Meeting dates are set at least 4-weeks in advance

They will also:

  • advise the Steering Group on data management and analysis strategies
  • review and analyse the data collected
  • review existing evidence
  • help finalise the list of questions for interim priority setting and the workshop, under the guidance and assurance of the Steering Group

Code of Conduct

It is important that members of the Steering Group work to high personal and professional standards. All Steering Group members are asked to commit to working according to the JLA principles:

  • Inclusivity: working with other members supportively, respectfully, and constructively.
  • Equality: patients, carers and clinicians, and the knowledge and experience they bring, are of equal value to the PSP.
  • Fairness and transparency: declaring any personal interests, and ensuring decisions and activities are documented openly.
  • Evidence based: ensuring the work of the PSP recognises the existing knowledge based for the diagnosis and treatment of inherited retinal disease.

In addition, all Steering Group members are expected to:

  • behave in a manner which does not bring the PSP or the JLA into disrepute or damage the relationship with Steering Group members, partners and any other stakeholders in the PSP.
  • maintain confidentiality when sensitive information is shared.

Anyone found to be in breach of this code/JLA principles may be removed from the Steering Group at the discretion of the PSP leader. Any concerns related to conduct should be raised with the PSP leader and/or the JLA Adviser.

Declaring interests

Steering Group members are asked to declare any interests relevant to the Vision Loss PSP. 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. In addition to disclosing interests, Steering group members will have the opportunity to indicate their agreement to being named publicity with reference to the PSP.