It is frustrating, but there are organisations such as the ARCs that will support PRPs during the initial phase. Recently i was asked to be a co-applicant on a study looking into fraility, i gave my time and was supported by GM-ARC, ultimately though the funding bid failed twice despite numerous rewrites of the proposal. We may yet try again and i hope i will once again be supported, but who knows!!
I totally agree that this space (grassroots and independent) is needed and shouldn't be part of this new network if it gets funded. We wish to retain our independence as a PPI provider as well :)
Your post and your comments ring very loud bells for us and one of those wonderful moments of 'ah, now this is how it should work' moments happened last week when we were approached to support a 'pre grant award for collaboration'. I almost did a little dance and hugged myself. We are being properly funded for 12 months' of work to frame the actual grant application that will follow. This is being funded by the NIHR who do seem to be grasping the fact that we are usually not funded for all the pre-grant work that is so necessary to ensure that the PPI voice is embedded from the get go, exactly as you describe in your above post. It's early days and it will take time for all funders to realise that this pre-work is vital to ensure PPI best practice is followed and properly funded. The other thing to mention is that we are supporting a university bid with multiple partners to Arthritis UK who are providing funding to create a national PPI network. Their call asks: "Applications should seek to develop a ‘UK Arthritis PPI Network’. The application should outline a model, such as, hub and spoke to address gaps in the PPI landscape for researchers by building and supporting a network of PPI groups." They want to provide better access to PPI support for early stage researchers and to access people with lived experience from groups who would not normally put their hand up to be involved in research amongst other things. Don't know whether the bid being led by Keele will be successful but the interview panel is happening this side of Christmas. I will keep you posted. Ailsa
Hi Ailsa - it’s refreshing to hear you were asked to be involved in a pre grant award for collaboration - we need more of those! And it will be interesting to see how a funded ‘UK Arthritis PPI Network’ looks and shapes up in the scheme of things. It sounds like a step in the right direction - we certainly need changes and could envision more of these initiatives. We do feel it’s important for PRPs to have an independent and unbiased ‘grassroots’ space like this for open conversation (which can sit within an overall infrastructure). Thanks for commenting and keeping us in touch - we really appreciate it!
No problem - if you are able to go to the main page here: https://prpnettt.substack.com you should see a number of tabs along the top, one of which is 'PPI Teams Directory' (we don't have a lot on that page yet but hope people will send us their info to add to it)
It is frustrating, but there are organisations such as the ARCs that will support PRPs during the initial phase. Recently i was asked to be a co-applicant on a study looking into fraility, i gave my time and was supported by GM-ARC, ultimately though the funding bid failed twice despite numerous rewrites of the proposal. We may yet try again and i hope i will once again be supported, but who knows!!
Ideally this should be supported UK-wide, not just in pockets in some regions. It’s good you experienced it in GM region - thanks for sharing 👍🏻
I totally agree that this space (grassroots and independent) is needed and shouldn't be part of this new network if it gets funded. We wish to retain our independence as a PPI provider as well :)
Your post and your comments ring very loud bells for us and one of those wonderful moments of 'ah, now this is how it should work' moments happened last week when we were approached to support a 'pre grant award for collaboration'. I almost did a little dance and hugged myself. We are being properly funded for 12 months' of work to frame the actual grant application that will follow. This is being funded by the NIHR who do seem to be grasping the fact that we are usually not funded for all the pre-grant work that is so necessary to ensure that the PPI voice is embedded from the get go, exactly as you describe in your above post. It's early days and it will take time for all funders to realise that this pre-work is vital to ensure PPI best practice is followed and properly funded. The other thing to mention is that we are supporting a university bid with multiple partners to Arthritis UK who are providing funding to create a national PPI network. Their call asks: "Applications should seek to develop a ‘UK Arthritis PPI Network’. The application should outline a model, such as, hub and spoke to address gaps in the PPI landscape for researchers by building and supporting a network of PPI groups." They want to provide better access to PPI support for early stage researchers and to access people with lived experience from groups who would not normally put their hand up to be involved in research amongst other things. Don't know whether the bid being led by Keele will be successful but the interview panel is happening this side of Christmas. I will keep you posted. Ailsa
Hi Ailsa - it’s refreshing to hear you were asked to be involved in a pre grant award for collaboration - we need more of those! And it will be interesting to see how a funded ‘UK Arthritis PPI Network’ looks and shapes up in the scheme of things. It sounds like a step in the right direction - we certainly need changes and could envision more of these initiatives. We do feel it’s important for PRPs to have an independent and unbiased ‘grassroots’ space like this for open conversation (which can sit within an overall infrastructure). Thanks for commenting and keeping us in touch - we really appreciate it!
So true. Could this space become a register? Maybe too much work to administer such a resource?
It could be too big a task. We‘ve added the PPI directory page as a starting point for profiles and connection.
Where will I find that directory please? Sorry, technically illiterate!
No problem - if you are able to go to the main page here: https://prpnettt.substack.com you should see a number of tabs along the top, one of which is 'PPI Teams Directory' (we don't have a lot on that page yet but hope people will send us their info to add to it)