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A note on definitions

Public* Involvement (PPI) is defined by INVOLVE as 'research carried out 'with' or 'by' patients, carers and members of the public, rather than 'to', 'about' or 'for' them', i.e. they are actively involved in the activities, organisation and governance of research.

*”Public” includes patients, potential patients, carers and people who use health and social care services as well as people from organisations that represent people who use services.

NIHR INVOLVE

This is distinct from both 'Public Engagement' (PPE) - where information and knowledge about research is provided to or shared with the public - and 'Public Participation' (PPP) - where patients or members of the public are participants or subjects in research that is done 'to' them.

Patients and the public are at the centre of healthcare and also our research. Patients and public bring a wealth of experience and provide valuable perspectives on the way that research is designed and delivered. PERC in collaboration with the NIHR Imperial Biomedical Research Centre (BRC) is committed to broadening the scope of our patient and public involvement activity in research, by building capacity and collaborating with other organisations locally and nationally, as well as demonstrating the value and impact of these activities through high quality, evidence-based work.

In early 2014 we mapped existing public and patient involvement (PPI) and public engagement (PE) activities across the NIHR Imperial BRC. The NIHR Imperial BRC PPI/PE Summary of Mapping shows a variable picture of PPI/PE activities across Imperial with an encouraging breadth and variety.

The most recent PPIE Strategy can be found here: NIHR Imperial BRC PPI Strategy‌ (2017/18-2021/22). The Strategy was developed by the NIHR Imperial BRC Public Advisory Panel, PERC and the Imperial College Healthcare NHS Trust (ICHT) Research Committee. 

Members of the NIHR Imperial BRC present their views on patient and public involvement in research during the 2016 open day.

The role of patient and public involvement

Members of the NIHR Imperial BRC present their views on patient and public involvement in research during the NIHR Imperial BRC Open Day 2016. BRC researchers and scientists involve and engage healthy volunteers, patients with specific conditions, carers of patients and general public in their research. Involvement is spread from commissioning and the initial stages of research, i.e. writing up proposals, throughout the research cycle, to the final dissemination of findings. Researchers acknowledge the contribution of patients and the public and the benefits of involvement in their research. We continuously seek to advance and innovate patient and public involvement and engagement in our research, measure impact and evaluate these activities.

What we are doing

  • We are developing structures and guidance to work more effectively with patients and members of the public
  • We offer training and support to both researchers and members of the public on patient and public involvement
  • We have been working with Imperial College research teams and Partners in a number of collaborative projects to establish effective patient and public involvement, i.e. , 100,000 Genome Project and Consent to Contact projects
  • We are working with the NIHR Health Protection Research Units (HPRUs)
  • We are showcasing our research and supporting public engagement events, including the Imperial Festival (May 2018)

Imperial and Partners PPI in Research Forum

We have established, co- chair and host the Imperial and Partners Patient and Public Involvement (PPI) Research Forum with professionals with a PPI remit and PPI representatives from the North West London area.

The Imperial College and Partners PPI Research Forum aims to:

  • Improve quality & impact of research for patients and public in NW London, 
  • Facilitate better research for better care across Imperial College and Partners, and 
  • Ensure patient-driven research is part of Imperial College and Partners Research Agenda.
Highlights of a round-table discussion with researchers, clinicians and members of the NIHR Imperial BRC Patient and Public Panel. Those involved discussed change in PPI culture and challenges around implementing PPI.

Patient and Public Research Panel round-table

Highlights of a round-table discussion with researchers, clinicians and members of the NIHR Imperial BRC Patient and Public Panel during the NIHR Imperial BRC Open Day 2016 are presented. Those involved recognised a change in PPI culture in research, i.e. PPI becoming more systematic and being multi-professional. Requirements such as the need for scientists and researchers to speak the same language with patients/public were acknowledged. Allocating/obtaining resources for PPI, representation of patients/public, sustainable PPI strategies, maintaining ongoing relationships with patients/public and embedding PPI were recognised as challenges for effective PPI.

NIHR Imperial BRC Public Advisory Panel

We established a generic patient and public panel to support us with the delivery of other activities in 2012. It currently has scope for up to 12 members and each member is a PPIE Public Champion in one of each of the Imperial Biomedical Research Centre's research themes.

Public involvement is central to our research and we continue working closely with patients and the public to ensure that their wealth of experience shapes all aspects of our research. For further information, please email ppi@imperial.ac.uk.

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Co-Creating Innovative Solutions for Health Course April 2018

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Co-Creating Innovative Solutions for Health Course London April 2018

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Co-Creating Innovative Solutions for Health Course London April 2018

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Exercise on Obstacles and Opportunities of Co-Creation

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Healthcare professionals and engineers co-create

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Multidisciplinary teams designing a research project

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LOL Lab

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QPR Family Community Day - March 2018