MQ, a leading global mental health research charity, is working with universities across the UK (University of Oxford, King’s College London, University of Cambridge, University of Manchester, Durham University) to design a new clinical trial platform for psychosis to help advance the treatments available to people with psychosis.
Patient and public involvement is a key part of the design and set-up phase of the project. They want to ensure that the needs and priorities of individuals with lived experiences of psychosis are considered to support the design of innovative processes that can support clinical trial recruitment.
They are looking for:
They are seeking a diverse range of patients/survivors with lived experiences of psychosis, as well as carers of individuals with lived experiences of psychosis.
They are seeking those with or without research experience to ensure a diversity of views are included and to provide fresh ideas and less-heard opinions.
Similarly, they will include lived experience experts (LEEs) who have prior experience taking part in clinical trials, as well as LEEs who have not taken part in clinical trials to provide novel insights on the barriers to participation in clinical trials.
The project will begin in September 2024, and will run for 30 months.
Full selection criteria for patients/survivors and carers are outlined below.
Patients/Survivors
Essential criteria
- Current or prior history of psychosis
- Current or prior experience engaging with an early intervention service for psychosis
- Strong interest in research
- Willingness to actively participate in group discussions to share input and feedback (remote and face-to-face meetings)
- Willingness to learn and engage in relevant training and mentorship schemes to support learning
- Willingness to review briefing materials in advance of group discussions
- Currently living in the UK
- Availability to take part in monthly meetings.
Desirable criteria
- Prior experience taking part in research studies
- Prior experience acting as a lived experience expert
- Prior experience taking part in a clinical trial
- An interest in the use of medication for the management of psychosis
Carers
Essential criteria
- Current or prior history of caring for a relative, family member or friend with first episode of psychosis
- Strong interest in research
- Motivated to support advances in the treatment of psychosis
- Willingness to actively participate in group discussions to share input and feedback (remote and face-to-face meetings)
- Willingness to learn and engage in relevant training and mentorship schemes to support learning
- Willingness to read briefing materials in advance of group discussions
- Currently living in the UK
- Availability to attend a monthly meeting.
Desirable criteria
- Prior experience taking part in research
- Prior experience acting as a lived experience expert
- An interest in the use of medication for the management of psychosis
Expected commitment from participants:
Lived experience experts will be invited to actively participate in monthly meetings with their respective working group. Lived experience experts will be asked to read and comment on study documents, ahead of working group meetings. Lived experience experts will be encouraged to actively participate in group discussion during working group meetings.
All lived experience experts will form part of the Patient and Carer Engagement Working Group, as well as one of the following five groups:
1) Infrastructure Working Group
2) Trial Design Working Group
3) Treatment Recommendation Working Group
4) Outcome Measures Working Group
5) Steering group committee
MQ will ensure you are supported throughout your involvement, e.g. providing extra and clarifying information as needed, and individuals will be reimbursed £50 for taking part in remote meetings (2 hour duration), and £150 for face-to-face meetings (4 hour duration).
Over the 30 month project, there will be a maximum of 60 remote meetings (2 per month over the 30 month project) so the total payment for remote meetings would be up to £3,000.
There will be a maximum of 3 face-to-face meetings, and so the total payment for the face-to-face meetings over the 30-month project would be up to £450.
Commitment to inclusion:
All lived experience experts will sit on 1 working group where they will share their ideas and thoughts about the design of a clinical trial platform.
To support individuals with lived experience, all lived experience experts will also sit on the patient and carer working group which will be a space for individuals to receive relevant training on clinical trials and terminology used across the project. This will also be a space to discuss learning needs, which will be provided within this working group on an ongoing basis.
Training on how to use teams/zoom for video conferencing will be available if needed. Training and support with software to download/view word documents to support the review of study materials will also be available if needed.
The majority of working group meetings will be remote over the 30-month project. However, up to 3 meetings will take place in London. All reasonable travel expenses will be reimbursed.
Closing date to apply: 31st July 2024
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