This document sets out the Terms of Reference for the Steering Group of the James Lind Alliance Pediatric Hospital Care Priority Setting Partnership (PSP). The Steering Group coordinates the Priority Setting Partnership and organises its activities.
The Steering Group must include representatives of patients, carers and clinicians. These may be members of a charity or professional organisation within the area of the PSP. Members will bring with them knowledge of the condition, an understanding of the patient, carer and clinician populations and access to networks of patients, carers and clinicians. Members will need to be fully engaged in the process and have the time to carry out the work involved.
The background and wider aims and responsibilities of the Pediatric Hospital Care PSP are set out in its Protocol.
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 PSPs in particular health areas.
Each PSP consists of patients, carers and their representatives, and clinicians, and is led by a Steering Group. Collaboration between patients, carers and clinicians to set the research agenda is extremely rare, but vital in drawing issues to the attention of research funders that might not otherwise be suggested or prioritised.
The role of the PSP is to identify questions that have not been answered by research to date, and then to prioritise these. The first stage is to ask patients, carers and clinicians, often via an online survey, for unanswered questions about clinical management on general paediatric inpatient units (GPIUs) that are important to patients (e.g. children and youth), carers (i.e. parents, family and caregivers) and health care professionals. These questions are then assessed to check they are in scope for the PSP, and are checked and verified as true uncertainties. An interim prioritisation exercise then takes place, before a priority-setting workshop is convened where participants debate and finally arrive at a Top 10 list of research priorities.
The eventual aim is to turn these priorities into research questions, and for members of the Steering Group to work with researchers and research funders to obtain funding for that research.
JLA will display all priorities on the JLA website. Further details about the JLA and PSPs are at http://www.jla.nihr.ac.uk/. A flowchart of the PSP process can be seen in the Templates and useful documents section of the JLA website at http://www.jla.nihr.ac.uk/about-the-james-lind-alliance/templates-and-useful-documents.htm.
The Paediatric Hospital Care Priority Setting Partnership
Membership of the Steering Group
The Steering Group membership must be a balance of caregivers and healthcare professionals. It is agreed that for the Paediatric Hospital Care PSP includes four (4) parent/carer representatives and four (4) healthcare professionals, and that at least one healthcare professionals and one parent/caregiver representative will need to be present in order for Steering Group for decisions to be made. Otherwise, meetings will proceed and recommendations will be made and ratified after by at least one healthcare professional member or at least one parent/caregiver representative, depending on which group’s views were not presented at the meeting.
Role of Steering Group members
Steering 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.
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 the full range of patient, carer and clinical stakeholder are involved in the PSP process
- Equality: patients, carers and clinicians, 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 Pediatric Hospital Care 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 the resources (including time and expertise) that they will contribute to ensure that each stage of the process is completed. Members of the Steering Group will:
- Publicise the initiative to potential partners. This includes advising on membership of the PSP (to ensure a wide and representative group of patients, carers and clinicians) and emailing contacts to invite them to participate
- Publicise and participate in an initial awareness meeting, if this takes place
- Take part in monthly Steering Group meetings/teleconferences. It is usual for a Steering Group to meet either by teleconference or face to face on an approximately monthly basis in order to keep momentum around the PSP and to maintain their relationship as a team
- If unable to attend, submit comments ahead of the meeting. 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 by responding to emails
- 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 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. This is the one-day workshop that brings patients, carers and clinicians together to debate, rank and agree a final Top 10. It is only attended by patients, carers and the healthcare professionals or support workers who actively work with them. Typically not all members of the Steering Group attend, allowing space for new participants
- 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
- 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
Chair: The PSP will be chaired by Katherine Cowan, a Senior JLA Adviser. The JLA Adviser also Chairs and runs the final priority-setting workshop. The JLA Adviser’s role is to support and guide the PSP, act 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.
Lead: Dr. Peter Gill is the lead for the PSP. The Lead works closely with the JLA Adviser and the PSP Project Coordinator to champion the PSP and ensure it is successfully promoted, completed and disseminated to funders.
PSP Project Coordinator: Dana Arafeh is responsible for the coordination and administration of the PSP. The scope of work includes:
- providing project management support, including organizing teleconferences, Steering Group meetings and the final workshop
- writing action notes and managing communications with stakeholders and the wider community
- assisting in questionnaire development, and the collection, management and analysis of responses
- helping develop the long list of questions, under the guidance and assurance of the Steering Group
- reviewing existing research questions and prepare them for publication on the JLA website
Information Specialist: Rashid Anwar is the Information Specialist for the PSP. The scope of work includes reviewing existing evidence, which includes conducting literature searches in MEDLINE, EMBASE, CINAHL and the Cochrane Central Register of Controlled Trials.
Declaring interests
Steering Group members are asked to declare any interests relevant to the Paediatric Hospital Care PSP. The JLA provides an example form, and the interests of each member will be 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. The same form asks Steering Group members to consider their agreement to being named in publicity about the PSP.
Researchers may sit on the Steering Group if the group feels this is appropriate and useful – the JLA Adviser will ensure that they do not have an undue influence on the outcome. Researchers who are currently clinically active may participate in the priority setting if they declare their interests.
Timescales
The Paediatric Hospital Care PSP first Steering Group meeting will be on April 22, 2020. We propose that the final priority-setting workshop takes place in May 2021.
Steering Group members
| Name | Affiliation | Role in Steering Group |
| Katherine Cowan | Katherine Cowan JLA | PSP Chair |
| Dr. Peter Gill | The Hospital for Sick Children | PSP Lead |
| Dana Arafeh | The Hospital for Sick Children | Project Coordinator |
| Rashid Anwar | The Hospital for Sick Children | Information Specialist |
| Dr. Sanjay Mahant | The Hospital for Sick Children | Steering Group member |
| Dr. Ann Bayliss | Trillium Health Partners | Steering Group member |
| Aubrey Sozer | The Hospital for Sick Children | Steering Group member |
| Francine Buchanan | The Hospital for Sick Children | Steering Group member |
| Michelle Quinlan | Children’s Hospital of Eastern Ontario | Steering Group member |
| Karen Breen-Reid | The Hospital for Sick Children | Steering Group member |
| Shelley Frappier | Children’s Hospital of Eastern Ontario | Steering Group member |
| Kim De Castris-Garcia | NA | Steering Group member |
| Mairead Green | Children’s Hospital of Eastern Ontario | Steering Group member |