Public and patient involvement
Public and patient involvement
The insights, ideas and experience cancer patients and carers bring is critical to help shape cancer research. As the end user of future healthcare advances, the public and patient perspective is essential to support the way that cancer research is designed and delivered. Public involvement in health research has been recognised by Higher Education Institutions, Research Organisations and the Government (NHS) as having valuable impact on research outcomes, clinical trials and precision treatments.
There are many terms associated with the inclusion of the public in health research, and it is important to understand the difference between them. Predominantly, you will see the terms Involvement, Engagement and Participation. Cancer Research UK defines these terms as follows:
Involvement:
Involvement is when patients use their experience of cancer to help shape research. You can consult, collaborate or partner with patients. Involvement can add value at all stages of the research cycle.
Engagement:
Engagement is where information and knowledge about research are shared with the public.
Participation:
Participation is where patients or healthy volunteers take part in research as the subject of the study. This is where research is being done to them, not with them.
Imperial Science Cafe and Public Involvement Group for Cancer
Patient-led projects and activities are championed through the Cancer Research UK Imperial Centre Public Involvement Group for Cancer. The Group meets regularly and can support researchers view a lay summary, review a Patient Information Sheet, prepare a grant application and find a patient representative for their study management committee. Also, the Imperial Science Cafés are a unique opportunity for cancer researchers to present and discuss their research projects with individuals affected by cancer in a relaxed, open and informal setting.
Imperial Patient Experience Research Centre
The Patient Experience Research Centre (PERC) is a multidisciplinary group of clinicians, public health specialists and social scientists combining strengths in quantitative and qualitative research methods. PERC aim to promote active communication between patients, researchers and clinical staff to address real problems, and through this improve the quality of healthcare and the impact of translational research.
Imperial Public Involvement Training
Imperial regularly hosts a series of workshops for researchers on how to involve the public in research. This course is aimed at researchers but is also suitable for patients and the public to learn how to support researchers develop their research ideas. Over four weeks you will learn how patients and the public can be involved across the research cycle. This ranges from identifying research topics important to patients, through to disseminating important findings to community group.
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Patient and public involvement and engagement is central to the work at the NIHR BRC at The Royal Marsden and the ICR, upholding the goal to increase cure rates and improve survival with smarter, kinder treatments and allow patients to live well with and beyond cancer. Any patient, carer or member of the public can become involved with the research undertaken at the NIHR Biomedical Research Centre at The Royal Marsden and The Institute of Cancer Research, London.
VOICE is a passionate community of members of the public, patients & carer. In January 2019, Imperial became part of the VOICE network, an online platform and community for public engagement and involvement established at Newcastle University. Through VOICE, we hope to make it easier for our researchers to involve the public in what they do, and to inspire more members of the public to contribute their insights, experience and ideas at all stages of our research.
Maggie's is a charity offering free practical, emotional and social support for people with cancer and their family and friends. Maggie's has a centre based in The Royal Marsden and West London.
CRUK provide a toolkit with guidance, tips and templates to help you plan, deliver and evaluate your patient involvement. Once you’ve planned how you want to involve patients, CRUK can also help you find them.
"Engaging with cancer patients was just the inspiration I needed to progress with my research after a very long and difficult year due to Covid-19. Their insights and contribution were really powerful and I learnt a lot which will undoubtedly shape my research."
Convergence Science Centre PhD student
Independent Cancer Patients' Voice (ICPV) is a patient advocate group independent of established UK cancer charities and aware of the value of medical research to both public health and to the national economy. The National Cancer Research Institute also coordinates patient and carer involvement through each of its research groups and via the NCRI Consumer Forum which runs regular Dragon's Den style workshops with investigators to review their research proposals.
Read more about the UK Standards for Public Involvement and how the National Institute for Health Research is supporting public and patient involvement through initiatives such as NIHR Partners in Research and NIHR Be Part of Research, as well as the NIHR Centre for Engagement and Dissemination which is bringing together its activities in PPI, engagement and participation with its strengths in research dissemination.
