Working with patients and the public

Notes and useful links on PPIPE

In 2011 I was in a serious road accident and suffered a severe traumatic brain injury. I have made a remarkable recovery but still live with the effects of this injury. Since my accident I have become very active in Patient Public Involvement, acting as lay member on research committees, contributing to clinical guideline development and acting as public reviewer for National Institute for Health Research.

Public patient involvement is now a mandatory requirement for most health and social care research. The National Institute for Health Research have identified that PPI reduces waste, improves research and makes the research process more transparent and accountable.

In the UK patient involvement was first formalised in 1996 with the establishment of INVOLVE. The 2008 Health and Social Care act introduced legislation around medical research and PPI has since become an established element of all stages of the research cycle. 2015 saw the publication of Going the Extra mile which made recommendations to improve PPI especially increasing collaborations and ensuring that PPI was more than a box-ticking exercise. 

Standards for Public Involvement were published in 2019 and there is evidence that these have improved practice but there is still work to do. The work of INVOLVE was based to the Centre for Dissemination and Research in 2020 and they are currently reviewing work in 5 key areas.

• Inclusivity and diversity

• Digital engagement

• Capacity building

• Impact and learning

 I'm pleased to offer a new training course 'an introduction to PPI' The course for early career researchers, will guide you through the jargon and show how to get the best impact from lay members in research.