Patients and the public are at the centre of healthcare and also our research. They 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 patient and public involvement activity in our 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.

Together, we developed the latest NIHR Imperial BRC PPI Strategy‌ (2017/18-2021/22) in collaboration with our NIHR Imperial BRC Public Advisory Panel and the Imperial College Healthcare NHS Trust (ICHT) Research Committee.


What do we mean by "involvement" in research?

People are often quite familiar with the term public engagement but are less sure about how this differs from involvement in research, or participation. The boxes below outline how these three terms are typically defined and the types of activities they may include. As an additional note, when we refer to 'the public' this 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 these services.

3 column general block - key definitions

Engagement

Public engagement is where information and knowledge about research is provided to or shared with the public.

Science festivals, seminars or the ‘after hour’ events often known as ‘Lates’ are good examples of this. 

Involvement

Public involvement is where people share their views and experiences to guide and inform how research is designed, carried out, shared and adopted. In other words, research is done 'with' or 'by' members of the public, rather than 'to' them.

This may include taking part in surveys, focus groups, discussion forums or advisory groups.

Participation

Public participation is where patients or members of the public are participants in or the subjects of research that is done 'to', 'about' or 'for' them.


What do we do?

  • We develop systems and guidance to work more effectively with patients and members of the public
  • We offer public involvement training and support to both researchers and members of the public
  • We work with Imperial College research teams and public partners across a wide range of collaborative projects to establish effective public involvement, e.g. Consent to Contact projects, young people's advisory network
  • We support the NIHR Health Protection Research Units (HPRUs) at Imperial
  • We showcase our research and support public engagement events, including the Great Exhibition Road Festival

Video playlist

The Feedback Wall (July 2020)

It all started with a question: What makes you feel alive? Imperial’s Cancer Research UK Centre and the Patient Experience Research Centre designed a feedback wall to engage and involve members of the public in research. The Feedback Wall is a conversation starter. It allows researchers to engage individuals with their research in an enjoyable and anonymous way. It can open conversations around decision-making in healthcare, inform research priorities and give people a voice in every part of the research cycle. The feedback wall can be used as a standalone tool or as an ice-breaker to invite people to other activities. This activity was supported by the Wellcome Trust, People Like You, NIHR Imperial Biomedical Research Centre, Imperial College Experimental Cancer Medicine, and Imperial CRUK Centre.

Promo video of the feedback wall

The Feedback Wall (July 2020)

Introducing the feedback wall - a tool to inspire conversations around research

It all started with a question: What makes you feel alive? Imperial’s Cancer Research UK Centre and the Patient Experience Research Centre designed a feedback wall to engage and involve members of the public in research. The Feedback Wall is a conversation starter. It allows researchers to engage individuals with their research in an enjoyable and anonymous way. It can open conversations around decision-making in healthcare, inform research priorities and give people a voice in every part of the research cycle. The feedback wall can be used as a standalone tool or as an ice-breaker to invite people to other activities. This activity was supported by the Wellcome Trust, People Like You, NIHR Imperial Biomedical Research Centre, Imperial College Experimental Cancer Medicine, and Imperial CRUK Centre.

Public panel members views on public involvement in research

NIHR Imperial BRC Open Day - Overview (2016)

Imperial BRC public panel members share their views on the role of public involvement in research

Members of the NIHR Imperial BRC present their views on public involvement in research during the NIHR Imperial BRC Open Day 2016. Imperial BRC researchers engage and involve a wide variety of people in their research, from the general public and healthy volunteers to patients with personal experience of health conditions and carers of patients. We continuously seek to advance and innovate patient and public involvement and engagement in our research, measure impact and evaluate these activities.

Public research panel round table

NIHR Imperial BRC Open Day - Round table discussion (2016)

Highlights of a round-table discussion with researchers, clinicians and Imperial BRC public panel

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. Those involved recognised a changing culture of public involvement in research. Public involvement was seen as 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 public involvement, representation of patients/public, developing sustainable PPIE strategies, maintaining ongoing relationships with patients/public and embedding PPIE throughout research projects were identified as challenges to effective public involvement.

Exploring experiences of cancer via a poetry in residence

People Like You: Written Portraits (Nov 2020)

Di Sherlock's Written Portraits Virtual Launch: experiences of cancer

This video is from a virtual launch of Di Sherlock's "Written Portraits". During a poetry residency, Di talked to people at Maggie’s West London and Charing Cross Hospital in London who are affected by, and working with, cancer. Her poetry practice involves writing a ‘portrait’ from these conversations. She then gives back a poem. The editing process goes to and fro between Di and the ‘sitter’ until they consider the portrait is a likeness or resemblance that they also like. This launch event included the following readings: (1) 'Vital Conversation' read by Clive Llewellyn; (2) 'Rewilding the Self' from 'The Art Class' read by Lin Sagovsky; (3) 'The Three Musketeers' read by Chris Barnes; and (4) 'Everyday Heroines' read by Susan Aderin. The full 'Written Portraits' are available at: peoplelikeyou.ac.uk/poem/. This was part of the research project ‘People Like You’: Contemporary Figures of Personalisation, supported by the Wellcome Trust: peoplelikeyou.ac.uk/

 


Our public networks


The NIHR Imperial BRC Public Advisory Panel

The Imperial BRC public panel support our Imperial BRC-funded researchers to ensure their research considers the public/patient/carer perspective. Panel members also help to co-develop and co-deliver training on patient and public involvement, as well as promote and advise on ways to reach and involve more diverse audiences in research.
For further information, visit the Imperial BRC webpage or email ppi@imperial.ac.uk.

The Young People's Advisory Network (YPAN)

The YPAN was first launched Autumn 2019 to enable people aged 17 to 25 to guide and inform research projects across Imperial College that are relevant to young people. It now has over 50 members.

Image of a patient

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