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.
Each PSP consists of patients, carers and their representatives, and clinicians, and is led by a Steering Group. The Steering Group oversees the activities of the PSP and has responsibility for the activity and the outcomes of the PSP. Collaboration between patients, carers and clinicians to set the research agenda is 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 agree which of these are the most important. The first stage is to ask patients, carers and clinicians, often via an online survey, for unanswered questions about child maltreatment. 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. An interim prioritisation exercise then takes place, where people with an interest in child maltreatment choose which questions are most important to them. Finally, there is a priority setting workshop where participants discuss the most important questions and agree a list of the Top 10.
The aim of the PSP is to highlight the important areas of research to the research and funding community and to work with them to develop the priorities into researchable questions.
In addition to the PSP’s own reporting activity, the JLA will publish all priorities on the JLA website. Further details about the JLA and PSPs can be found on the JLA website. A flowchart of the PSP process can be seen in the Templates and useful documents section of the JLA website.
The Psoriasis Priority Setting Partnership
The background and wider aims and responsibilities of the Psoriasis PSP are set out in the JLA Psoriasis 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 membership to the wider PSP and, where capacity permits, will carry out the practical work needed to collate the interim and final priority setting exercises. The Steering Group is also responsible for helping raise awareness of the final Top 10 uncertainties, including among research funders.
Membership of the Steering Group includes individuals and representatives of organisations which can reach and advocate for patients and clinicians, as well as the JLA Adviser. Steering Group members with direct relevant experience as patients, carers or healthcare professionals are invited to participate in the priority setting exercise.
Role of 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 in the project
- a broad understanding of project management issues and the approach being adopted
- commitment to working with other members respectfully and constructively
- advocacy for the project’s outcomes. There are to be three face to face SG meetings altogether plus regular telephone conferences and a workshop towards the end of the project; dates for these meetings are subject to review.
Specifically, Steering Group members will:
- attend telephone conference calls (generally 6 weekly). To be effective in its decision making, each meeting should be represented with at least a clinical, patient and research element
- attend face to face meetings, or 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
- share networks and contacts for membership of the PSP
- publicise the initiative to potential partners to encourage them to join the PSP. 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
- have oversight of the collection of treatment 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
- verify the shortlisted questions to be taken to the final priority setting workshop
- participate in the final priority setting exercise (if job role qualifies them to represent the views of patients, carers or clinicians). This is the one-day workshop which 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
- be involved in the development of the Top 10 Psoriasis treatment uncertainties into research questions for funders
- work with the National Institute for Health Research Evaluation, Trials and Studies Coordinating Centre (NETSCC) and other research funders to develop the priorities into research questions.
It is agreed that for this Psoriasis PSP, 50% of patient/carer representatives i.e. two patient/carers and 50% of healthcare professionals i.e. three healthcare professionals, plus the chair or acting chair will need to be present in order for Steering Group meetings to go ahead and for decisions to be made.
If the steering group is not quorum the PSP would share decisions / comments via email within an agreed time limit for feedback to members.
Declaring interests
Steering Group members are asked to declare any interests relevant to the Psoriasis PSP. The JLA provides an example form, and the interests of each member 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.
PSP Coordination
The PSP will be chaired by Maryrose Tarpey, JLA Adviser. Naomi Wells, University of Manchester, 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 discussed with the group
- papers are available at least a week before meetings
- meeting notes are circulated within two weeks.
Timescales
The Psoriasis PSP first Steering Group meeting will be on 19th June 2017. We propose that the final meeting prioritisation takes place before the end of October 2018.
Key contacts
PSP Chair: Maryrose Tarpey, JLA adviser. Email: maryrosetarpey@outlook.com
PSP Lead: Dr. Helen Young. Email: helen.s.young@manchester.ac.uk
PSP Investigator: Dr. Rabiya Majeed-Ariss Email: rabiya.majee-ariss@manchester.ac.uk
PSP Co-ordinator: Naomi Wells Email: naomi.wells@manchester.ac.uk