PATIENT & PUBLIC INVOLVEMENT (PPI)
IN AVATAR THERAPY
Patient and Public Involvement (PPI) means working in collaboration and co-production with people with lived experience of mental health issues. We believe PPI is crucial to conducting high quality research, and it is central to the AVATAR2 trial.
WHY IS PPI IMPORTANT?
We want to make a genuine difference to the lives of people living with mental health difficulties and their families. We believe that people with relevant lived experience are best placed to tell us what is important to them, what works and what doesn’t in our research.
It is a public right to know how public money is being spent (through taxes or charitable giving) and because it is the public who will be affected by the results of the research.
It will improve the research. We believe – and research shows – that the quality, relevance and impact of research will be improved by drawing on a wide variety of perspectives and experiences.
WHAT DOES PPI WORK INVOLVE?
The AVATAR2 team hope that people who get involved in PPI will bring their own ideas for how to contribute. We will work with each person to develop a shared understanding of their strengths, interests and availability, and to help them to decide how they want to contribute. To give an example of what this may look like, three different possible levels of involvement are outlined in the PPI diagram below.
Hear from some of our existing PPI group members here.
PPI involvement is FLEXIBLE. Each person can choose what they do and don’t want to get involved in, so involvement will look different for everyone. People can also change how involved they would like to be over time to mirror changes in availability and interests.
WHO CAN GET INVOLVED?
We are seeking the voices, knowledge and expertise of people with lived experience of hearing voices, of using mental health services, or of supporting someone who hears voices.
HOW CAN I GET INVOLVED?
There are local PPI reference groups in each site who will provide support and input to the AVATAR2 trial. To get involved, or to find out more, please contact your local team:
PPI Flexible Involvement Diagram
Stay informed of what is happening in the study as part of the PPI COMMUNITY:
Keep in touch via email/text/phone
Get regular news updates & meeting minutes
PPI Reference Group
PPI Consultancy and Research Work
LOCAL PPI GROUPS: quarterly meetings in London, Manchester and Glasgow (virtual during Covid).
WHOLE-TRIAL PPI GROUP: virtual meetings twice a year.
PPI group members can choose:
Which meetings they would like to attend
How much of an active role they want to play within each meeting.
We hope that PPI CONSULTANTS will take a leading role in a range of activities including (but not limited to):
Staff & participant recruitment
Developing accessible resources
CO-PRODUCING RESEARCH exploring people’s experience of AVATAR Therapy
Public dissemination of findings
Hear from our PPI Group
“I think Avatar therapy is a revolutionary form of therapy which helps treat people who hear distressing voices stand up to them in a passive, non-aggressive way.
I am a member of the South London PPI team and I was a participant lucky enough to have the therapy in the first trial. With the PPI Group I am looking forward to discussing ways in which we can all help the therapy evolve so it can benefit many other people who hear distressing voices.”