Updated September 2020
Agreed Responsibilities
Responsibility of the YPAG member
- Consistently, and punctually, attend half-day meetings on Saturday afternoons or on-line digital meetings (overall time commitment of up to 4 hours).
- Committing to being an active member of the group until notice is given by either the YPAG member or researcher (up to the age of 25 years): giving as much notice as possible if you are unable to make a meeting.
- Engaging to the best of their ability in sessions and taking on different roles within, and after each sessions.
- Keeping in touch, replying promptly and completing tasks, if required, between meetings.
- Keeping personal experiences shared by other members confidential.
- Keeping the meeting confidential by not taking screenshots or recording the sessions.
- Respecting each other’s perspectives and experiences.
- Providing YPAG facilitators (or the designated YPAG member – see terms of reference) with honest feedback about the session.
- Use of your camera is recommended particularly in small breakouts but optional – whatever you feel more comfortable with at first.
- Wear appropriate clothing whilst in the zoom meeting.
- Mute yourself if there is background noise so as not to distract others in the meeting.
Responsibility of the facilitator
- Making sure that everyone has a chance to have their voice heard.
- Providing training as needed.
- Providing each YPAG member with reimbursement for equivalent 4 hours participation; preparation, attendance and follow-up for digital meetings or half-day physical meeting.
- Providing additional reimbursement for additional optional activities.
- Keeping personal experiences shared by YPAG members confidential.
- Ensure personal data is protected.
- To disclose whether the meeting is being recorded at the beginning of the session.
- Updating YPAG members on research studies and data they are involved in.
- Facilitating and notifying YPAG members of additional opportunities.
- Making it engaging and fun!
- Providing screen breaks for digital meetings and during physical meetings providing lunch/ snacks!
Terms of Reference
1. Introduction
The Neuroscience, Ethics and Society (NEUROSEC) group at the University of Oxford seeks to explore the ethical and societal dimensions of advances in neuroscience and mental health, especially where these advances impact the lives of children and young people. To make sure that the group’s projects are authentically driven by the voices of young people, it has convened the NeurOX YPAG in order to co-produce research that is relevant, responsive, and ‘real’ to their lives.
2. Objectives
The YPAG will work alongside the NEUROSEC team to develop a wide range of research studies exploring young people’s attitudes surrounding mental health ethics. The precise nature of the YPAG’s involvement will differ from study to study, but can include co-production, refining research questions, designing materials and research tools, recruiting participants, analysing data, and disseminating findings.
In order to support the activities of the YPAG, the facilitators will ensure that members receive the relevant training they need to undertake their role with confidence. In doing so, members will learn about mental health, ethical research, the research process, and associated topics.
Members of the YPAG are also encouraged to play an active role in public engagement, and will be supported by facilitators, who will highlight such opportunities, including attending and presenting at academic conferences, writing blog posts about meetings and the group’s wider activities, and attending other events to promote the group’s work.
3. Membership
The YPAG is comprised of young people aged up to 25 years from the Oxfordshire area, following a formal application process to ascertain their interest in mental health and ethics, as well as their commitment.
4. Facilitators
The YPAG is co-ordinated by Vanessa Bennett, and supported by other members of the NEUROSEC group at the University of Oxford. Occasionally, researchers from the Department of Psychiatry, or other groups, will attend meetings to facilitate a session. Experienced members of the YPAG will be encouraged to help co-facilitate and receive necessary briefing, support and training to carry out this function.
5. Basic principles governing the group and all its internal and external interactions
The group is founded on core principles of collaboration, transparency, responsivity, empathy, respect for all group members, responsibility and commitment. These principles guide the operations, decision-making procedures, and activities of the group. The group has a duty to safeguarding of members. Details are listed later in: Digital meetings: ‘Ground rules’, keeping everyone safe during virtual meetings and use of Zoom. The same principles are applied to physical meetings with regards to disclosure.
The group will adhere to Oxford University GDPR regulations and the Data Protection Act 1998.
6. Frequency and format of meetings
Members will meet one or two times per term, on Saturday afternoons in central Oxford, or on-line using Zoom or another password protected digital platform. Smaller groups of members who have expressed interest in supporting specific projects, and other opportunities, may meet more frequently to support that work.
7. Confidentiality
Full, open discussion about mental health may sometimes involve participants disclosing sensitive information about their own experiences (though is not required). Such disclosures can be valuable, but can only take place within a mutual understanding that confidentiality will be respected. Group members must not communicate any personal narratives or confidential information that they learn as a result of being a member of the YPAG.
8. Reimbursement
YPAG members play an indispensable role in the research process, and as such it is crucial that the time and effort that they commit to the group is appropriately recognised. As such, junior members will receive a stipend in the form of £35 monetary compensation for up to 4 hours participation for on-line (to include preparation, on-line attendance and post-meeting work) or half-day physical meetings they attend inclusive of travel expenses. Senior members of the YPAG, who have accrued a significant amount of experience and expertise, are expected to support the facilitators in designing and running sessions, and these additional contributions will likewise be recognised with a £50 stipend per meeting. Expenses incurred when travelling to and from meetings outside of Oxford will be reimbursed separately.
9. Internal Evaluation
Periodically, members will be asked to reflect and consider the progress of the YPAG in its key focus activities, and its overall direction. This information will be collated and fed back to the relevant parties. The facilitator team will be responsible for collating the findings, and finding ways to best incorporate feedback into future sessions.
10. Procedure for complaints or concerns from group members
Any complaints or concerns should primarily be directed to the YPAG facilitators’ team by contacting Vanessa Bennett (vanessa.bennett@psych.ox.ac.uk) or Gabriela Pavarini (gabriela.pavarini@psych.ox.ac.uk). At the start of each academic year, a senior YPAG designated contact person will be appointed and communicated to YPAG members if for any reason do not feel comfortable sharing your concerns with the facilitators.
If you feel more comfortable raising a concern outside of the YPAG facilitator group, members can contact Alexandra Almeida (alexandra.almeida@psych.ox.ac.uk) or Ilina Singh (ilina.singh@psych.ox.ac.uk).
11. Leaving YPAG
In a situation where YPAGers are unable to continue as members, we ask that they notify the facilitators as soon as possible. Resigning group members may be asked to provide feedback on their experience in writing to help guide the future running of the YPAG.
- See also: Ground Rule for Digital Meetings
