One of our Glasgow PPI colleagues shares their experiences so far.
Being a part of the Public and Patient group has been a great experience as someone who has used mental health services for all of their adult life. Having researchers and psychologists willingly hold themselves accountable to the people they are meant to be helping, and willingly so, is so refreshing and bold. It shouldn’t be, but it is. And I commend the team for doing so.
It has been very helpful to interact with others who have similar or different experience and see what advice and criticisms they offer of the process. I’ve enjoyed meeting people and offering help where I can to the ongoing good work of the AVATAR trials.
They’ve also listened to previous feedback from PPI groups of other studies/areas. Too often, people ask for the emotional labour of those with lived experience on an entirely voluntary basis with no payment for their time while others benefit. The team at AVATAR have made sure to offer payment in some form for all the work done by ourselves. This is a small but incredibly meaningful gesture.
I hope that the contributions of the patients and public continue to influence scientific direction, as these are the people that research is hoping to reach. The AVATAR study has been inspiration in its approach of PPI and it has been a refreshing and healing experience to be part of it