We want our research to be as impactful as possible. To achieve this, we’re committed to involving people affected by cancer and members of the public in our work and in the research that we fund. This includes patients, loved ones and carers.
To help you with this, we’ve created a toolkit with guidance, tips and templates to help you plan, deliver and evaluate your patient and public involvement (PPI) activities.
Go to the toolkitParticipation, engagement and involvement of people affected by cancer and members of the public can all add value to research in different ways. Here's how we define these terms.
Participation is where patients or healthy volunteers take part in a research study.
They are the subject of the study and the research is being done to them, not with them.
Participation is necessary to help you progress your research and gain data.
Engagement is where information and knowledge about research is shared with the public.
Examples of this can include lab tours, research open days and blogs. By sharing your progress and passion you can help inspire more people to get involved.
Involvement is when people affected by cancer or members of the public use their experiences of cancer to help shape research.
You can work with them at any stage of your research to help define your research questions, plan and design your research, develop patient-facing documents or share progress.
We will work with people affected by cancer and members of the public to guide, influence and shape projects to ensure our work meets their needs and to increase our understanding of cancer.
We will seek input from members of the public, who may not have previous experience of cancer, particularly for our research on cancer epidemiology, prevention, early detection and diagnosis.
We will involve people affected by cancer and members of the public in an effective way across our research activities. This may include helping shape research proposals, reviewing applications and contributing to funding decisions, monitoring our ongoing research, influencing and shaping our research events, and developing our PPI processes.
We will ensure applicants, expert reviewers, research events programme committees and our staff understand what meaningful, high-quality PPI is and have relevant support and resources to do it well.
We will provide ongoing support and training for our PPI representatives, so that they can contribute effectively and shape and influence our work.
We will define effective PPI processes to maximise the value it brings to our work.
We will work with our PPI representatives to identify further opportunities to involve people affected by cancer and members of the public in our work.
We will ensure people are involved in a way that is accessible and inclusive.
We will uphold our Shared Commitment to Public Involvement alongside the Health Research Authority, the National Institute for Health Research, and a host of other organisations.
We will honour the UK Standards for Public Involvement and work with key partners, including the National Institute of Health and Care Research, the Health Research Authority, the National Cancer Research Institute and UK Research & Innovation, to align approaches, reduce duplication and share knowledge and best practice.
We expect anyone we fund to involve people affected by cancer and members of the public in their research where it has a clear purpose and adds value. The outcome of all cancer-related research will impact the lives of cancer patients and their loved ones.
if any areas of your research will be public facing, including sharing your research
if your research will have patients or members of the public taking part as the subjects of, or participants in, your research
if you will be taking samples from patients or healthy individuals (especially relevant for clinical, population, social and some basic research)
if you are doing basic science and your work will impact patients' lives at some point in the future
if there are ethical issues or implications associated with your research
If you’re unsure whether you should involve people affected by cancer or members of the general public, ask them. Working with them to decide if and how you involve them is great practice. It helps you avoid making assumptions about what people want to be involved in and where they can add value.
Your plans to involve people in your research may be reviewed and considered in the decisions of our funding committees, and you may be asked to justify the absence of any plans.
PPI has the potential to bring benefits to any area of research. People affected by cancer can act as critical friends, improving your work by helping you understand the realities of cancer and offering new ideas and perspectives.
Read our case studies for real examples of PPI in research
Involving people affected by cancer and members of the public will improve the relevance and quality of your research, resulting in a stronger funding application. Most funders expect to see PPI plans in your applications.
Working with people affected by cancer and members of the public increases the relevance of research by focusing on what is important to them and will have the greatest impact for them.
Involving people affected by cancer and members of the public encourages ongoing discussion about the best way to approach various aspects of your research. This enables continuous reflection, challenges assumptions and improves quality.
People affected by cancer and members of the public can help you better understand and articulate the potential patient benefit of your research and identify meaningful and impactful study outcomes.
Involving people affected by cancer and members of the public in your research design and in the development of patient information and consent documents, can help increase sample donation, study recruitment and retention.
Working with people affected by cancer and members of the public will highlight any ethical or sensitive issues that need to be mitigated. This will help if your research needs ethics approval. Involving patients and loved ones also increases transparency about how public funds are spent.
Involving people affected by cancer and members of the public can keep your research focused on what matters most for them and can increase your team's motivation.
By working with people affected by cancer and members of the public, you’ll strengthen your interpersonal, facilitation and communication skills. They will help you better understand how you can communicate with a range of groups.
Involving the general public helps raise awareness of the importance of research. The people you involve will often become advocates. They can then help shape and deliver any public engagement activities, helping to generate more public interest.
Each year, we involve more than 90 PPI representatives in our work. They bring invaluable insights and experience to everything we do. We also work closely with our Patient Involvement team to ensure that people affected by cancer have the opportunity to contribute to cross-cutting initiatives and ad-hoc reviews.
The following table shows the wide spread of PPI representation and involvement across our work as of 2024.
Patient and public representatives | Involvement |
|---|---|
8 | full voting members on our Clinical Research Committee and associated funding and monitoring panels |
26 | members on our joint Patient and Public Involvement Panel in our Early Detection and Prevention and Population Research Committees |
2 | lay members with relevant professional expertise supporting our Research Careers Committee |
14 | members of the Patient and Public Involvement panel supporting initiatives by the International Alliance for Cancer Early Detection |
12 | members of the Cancer Grand Challenges Advocacy Panel |
2 | members of the Experimental Cancer Medicine Centres (ECMC) Paediatric Network Strategy Group |
2 | members of the ECMC Advisory Board |
2 | involved with the ECMC Data Integration theme |
1 | member of the Experimental Cancer Trial Finder Governance Group |
9 | members of the Cancer Data Patient & Public Community Steering Group supporting our Research Data Strategy work |
12 | members of the Data Resource Review Group |
8 | members of the Commercial Data Partnerships Panel |
8 | members of the Patient Involvement Panel for the Centre for Drug Development |
Whether you’re just starting your application or already hold funding, we offer guidance and support throughout your research career.
Our strategy shapes how we'll discover more about the mechanisms of how cancer develops and progresses to unlock new and better ways to prevent, detect and treat it.
We actively involve people affected by cancer through the Involvement Network. They are helping us beat cancer sooner while meeting the needs of patients and their loved ones.
