Useful information

Getting started with a new focus group:

It is a good idea to decide on some basic principles and processes with a new group of patients. The 4PI framework is a useful way to structure the discussion. 4PI stands for Principles, Presence, Process, Impact. For more information see http://www.nsun.org.uk/about-us/our-work/national-involvement-partnership/4pi-blog/

Principles:

PPI at UHB operates under the general principles of NIHR Involve. For more information see PPI_INVOLVE_Briefing_Notes or INVOLVE Values-Principles-framework-Jan2016

Ethics:

Text: Ethical review is not necessary for PPI. See PPI Ethics

Payment:

Expenses should always be paid for patients to attend meetings and refreshments should always be provided at meetings. Payments for patient involvement work should be decided on a project-specific basis and should be clear to all involved. Further guidance is given in Budgeting INVOLVE and INVOLVE Payment, and what you need to know

Funding:

Funding for PPI should be costed into proposals. For pre-proposal PPI, the Research Design Service offers small grants. The process for application is to register a request for support on their website and tick the box that says you need help with patient involvement. You may also request help with other aspects of your proposal

http://www.rds-wm.nihr.ac.uk/How-can-we-help/Support-Request-Form.aspx

Setting Research Priorities:

Patients should be involved in the setting of research priorities. Rather than taking a pre-conceived idea to them for approval, discuss with them what questions they would like research to answer. The James Lind Alliance (JLA)  is a non-profit making initiative established in 2004. It brings patients, carers and clinicians together in Priority Setting Partnerships (PSPs) to identify and prioritise the Top 10 uncertainties, or unanswered questions, about the effects of treatments. It is a good idea to check this to see whether there has been a PSP in your research disease area. For more information see James Lind Alliance summary