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. 

Participation

 Where people take part in a research study

  • people being recruited to a clinical trial or other research study to take part in the research

  • completing a questionnaire or participating in a focus group as part of a research study.

Involvement

Where members of the public are actively involved in research projects and in research organisations. Examples of public involvement are:

  • as joint grant holders or co-applicants on a research project

  • involvement in identifying research priorities

  • commenting and developing patient information leaflets or other research materials

  • undertaking interviews with research participants

  • user and/or carer researchers carrying out the research.

Engagement

 Where information and knowledge about research is provided and disseminated.

  • science festivals open to the public with debates and discussions on research

  • open day at a research centre where members of the public are invited to find out about research

  • raising awareness of research through media such as television programmes, newspapers and social media

  • dissemination to research participants, colleagues or members of the public on the findings of a study.

Engagement with patients and the public

I am always happy to help develop and deliver engagement programmes. Get in touch to talk about your project

Questions to ask before you begin

What do I want to say?

Be clear about your message and don’t try to say too much. Thing big picture and relevance to the audience

 

Who am I talking to?

Who is your audience? Where are they? What do they already know? What barriers might prevent your message reaching them?

 

What format should I use?

How best to get your message to your audience. Will you meet them, use social media, pod cast, poster, presentation?

 

What I want from them?

Are you after immediate feedback? Do you want them to change their understanding, opinions, behaviour? How will you know if you’ve achieved this