PPIE Network Webinar

Yes, the team hopes this will be the first of more webinars. Future sessions may include Platform updates, research updates and more opportunities for discussion with the Network.

Opportunities will be shared directly with Network members by email. Current and upcoming options include completing the industry interest survey, expressing interest in blog writing, and future involvement in awards review committees. Hub-specific opportunities may also be posted on individual hub websites, and wider involvement opportunities are shared through organisations such as McPin.

Not always. It depends on the individual hub and how its LEAP or PPIE group operates. Some hubs involve people across several sites and are not limited to one location, while others may have different requirements depending on whether meetings are online or in person.

Yes, many meetings are held online to make involvement possible for people who cannot attend in person. Some in-person events also take place, mainly for researchers and steering group members, and hybrid options are considered where appropriate.

The Network aims to make involvement accessible by considering how information is presented, using clearer language, breaking up text, avoiding jargon, explaining acronyms, sharing recordings and slides, and allowing people to contribute in different ways, such as using chat or keeping cameras off. The team also invites feedback and accessibility requests so support can be adapted.

The term can vary by study and context, but within the webinar it was described as including experiences such as schizophrenia, bipolar disorder, severe depression, complex emotions, EUPD/BPD, CPTSD/PTSD and other psychoses. The team also emphasised that lived experience involvement is broad and includes carers, neurodivergent people and people with more than one diagnosis. PTSD in particular was asked about, which may be relevant, particularly through areas such as the Complex Emotions Hub. 

For lived experience involvement, the team said it does not work by excluding people based on a narrow diagnosis. Specific research projects may have their own eligibility criteria, but wider PPIE involvement is broader.

The Platform does not currently provide wide-scale general training, but it does provide focused training and support for specific activities, such as awards review committees and blog writing. Further training may also develop around industry involvement, dual expertise and compassionate leadership.

People with lived experience are invited to join awards review committees when relevant opportunities arise, contacted through email. Reviewers look at applications, reviewing the PPIE sections, submitting comments and attend a review committee meeting with other reviewers. These roles are remunerated, and future opportunities will be shared with the Network when dates are confirmed.

This would be considered case by case. The main issue is managing conflicts of interest, so the team would review each situation and make sure people are not involved in judging anything where they have a conflict.

Some opportunities are paid, but not all Network activities can be remunerated. 

For paid lived experience involvement, the Platform uses the NIHR rate of £27.50 per hour. Examples of paid opportunities include blog writing and awards review committee work.

People will be asked to submit an expression of interest, including what kind of research they would like to write about. The team will then match interests with available researchers. Three people will be selected in this first round, with the possibility of further opportunities later.

The hubs are funded for five years and are currently just over two years into that funding. Each hub has its own separate funding and manages it independently. The coordinating centre also has a separate pot of funding for cross-hub projects and works to ensure those projects involve multiple hubs.