The National Institute for Health Research Oxford Health Biomedical Research Centre (OH BRC) is a partnership between Oxford Health NHS Foundation Trust and the University of Oxford. It aims to bring the best science to mental health and dementia.
The Patient and Research Strategy Group is the strategic Patient and Public Involvement group for the OH BRC and was established in December 2016.
1. Purpose of PAR Strategy Group
- To actively involve patients, carers and the public, to work with staff, in the development and delivery of the Patient and Public Involvement and Engagement Strategy (PPIE) for the OH BRC.
- To bring together a diverse range of voices and experiences to influence PPIE in research at the OH BRC, and help ensure PPIE contributes to improving the quality and effectiveness of research.
2. Role of individual group members
We want people to join this group of patients, carers, public and staff because they have had direct or indirect experience of mental ill health and/or have an interest in research; and want to work as partners to make the OH BRC’s research as good as it can be for the patients it is designed to benefit.
Specifically, the role includes:
- Prepare for and attend PAR Strategy Group meetings.
- Actively participate in the group’s work and Patient and Public Involvement and Engagement at the OH BRC.
- Actively participate in the annual review process for the Group.
- Represent the interests of Patient and Public Involvement and Engagement at the OH BRC.
- Have a genuine interest in the initiatives and outcomes of the OH BRC PPIE programme.
All members will agree to follow the PAR Principles (see point 7) when engaging with, or on behalf of, the group.
3. Membership
- Up to 17 patient, carer and public members (over the age of 18) – with a minimum of half being patient members.
- Up to 10 staff members – to include researchers, OH BRC leaders, mental health staff and PPI staff.
- Other staff and stakeholders will be invited to attend meetings or projects as relevant.
- The group will have a Patient Co-chair and a Staff Co-chair, who will be supported by the Patient and Public Involvement Manager.
- A nominated staff member of the group (‘PAR support role’) will provide additional support to patient, carer and public members where required:
- The PAR support role provides a space when needed for PAR members to discuss personal and emotional reactions to their involvement in the group.
- The PAR support role will not offer counselling or respond to concerns or complaints.
- The role will be taken on by a staff member(s) of PAR who is not the co-chair. The staff member(s) that take on this role will have clinical experience.
- This is a new role from January 2021 and will be reviewed with the role holder(s) and the wider PAR membership group after 9 months or 3 PAR meetings (whichever is soonest).
4. Time Commitment
- Members and chairs are asked to commit to their role in the group for 2 years, and membership and appointments will be jointly reviewed every 2 years.
- The group will meet around 4 times a year, mainly in Oxford or online. Meetings will last no longer than 3 hours.
- Members are expected to attend or send apologies in advance of all meetings. We request members to attend at least 50% of meetings. Any difficulties in attending meetings should be discussed with the PPI Manager.
5. Administration
- The PPI Manager will organise PAR Strategy Group meetings and activities, including payments for time and expenses, and will support the group to operate in line with the PAR Principles.
- Following each PAR Strategy Group meeting, action points will be circulated, and progress reported at future meetings.
- The group will use email to organise meeting dates, communicate between meetings, and to share items and papers related to the work of the group. A workspace on FutureNHS will also be used for sharing documents and discussion between meetings. If required and requested, printed copies of papers can be provided.
- The OH BRC ‘Problem Solving Procedure for Patient and Public Involvement Contributors’ will be used to guide the resolution of concerns or complaints.
- The PPIE Strategy outlines accountability and reporting for PPI at the OH BRC. Progress in delivering the PPIE Strategy will be published at least annually.
6. Payment and expenses (for patient, carer and public members)
- We will reimburse you for any travel and/or carer-related expenses that you might incur in fulfilling your role. We will discuss these with you in advance of the first meeting that you attend, together with the process for making a claim.
- In addition, we offer reimbursement for your time at the rate of £75 per regular PAR Strategy Group meeting (to include preparation and follow-up): it is your choice whether to accept this or not.
- Reimbursement for other PAR related activity will be guided by the OH BRC PPI Payment Policy.
- Please note that if you are receiving state benefits, a pension, pension credits, tax credits or are liable for income tax and National Insurance, receiving any form of payment may affect you. See more information on the INVOLVE website and in our PPI Payment Policy.
7. PAR Principles and Guidelines for Meetings
Principles
- There is mutual respect between group members, who are supportive of each other, non- judgemental, respect difference and listen to people’s views.
- Everyone is equal.
- We have collective responsibility for the group.
- We respect the time each member of the group contributes and seek to ensure time is shared equally between us.
- We will maintain confidentiality of group discussions and members.
- We will treat each other as we would like to be treated ourselves.
- We will listen actively and show respect, especially during lively discussions.
- We will use clear and concise information – no acronyms or jargon.
- We take responsibility for looking after ourselves and will take time out if we need it.
- We will assume good will.
- If we challenge, we will challenge the statement and not the person.
Practically, this means in our interactions and meetings we will:
- Send apologies in advance.
- Arrive on time for meetings and finish punctually.
- Declare any conflicts of interest.
- Have mobile phones off whenever possible or advise the group if there is the need for a phone to be on.
- Support our meeting chairs in the use of these principles.
For virtual meetings we agree the following additional points. We will:
- Turn our microphone to mute when not speaking.
- Begin each meeting with a round of introductions.
- Advise the group (at the start of the meeting) if we are not in a ‘private’ space.
- Indicate we would like to contribute by using ‘the raise a hand function’ or making a note in comments box or physically waving a hand on the screen.
- The PPI Manager is responsible for organising virtual meetings with sufficient levels of security. If a meeting is ‘crashed’ the meeting chairs or PPI Manager will end the meeting.
8. Definitions
- Patient and Public Involvement is when people are actively involved in research projects and research organisations. It means research that is carried out with or by patients, carers and members of the public.
- Engagement is where information and knowledge about research is provided and disseminated to the public, i.e. science festivals, open days, media coverage.
- A conflict of interest could be working for, or having involvement in activities, organisations or funders related to the research topic being discussed, or being involved as a participant in a research trial directly related to the research being discussed. If unsure, PAR Strategy Group Members are encouraged to speak to the Patient and Public Involvement Manager.
9. Glossary
We avoid the use of ‘jargon’, and always spell out terms and names before using acronyms. Any acronyms that have been used within this document are also spelt out in full below:
NIHR National Institute for Health Research
OH BRC NIHR Oxford Health Biomedical Research Centre
PAR Patients and Research
PPI Patient and Public Involvement
PPIE Patient and Public Involvement and Engagement
Signature: Each member of the PAR Strategy Group is required to sign up to the Terms of Reference and Principles
Last Updated: March 2021
