Patient involvement toolkit for researchers
Patient involvement can improve the quality and relevance of your work, helping you better understand and articulate the benefits your research can have for cancer patients.
This toolkit provides guidance, tips and templates to help you plan, deliver and evaluate your patient involvement. Once you’ve planned how you want to involve patients, we can also help you find them.
Patient participation, engagement and involvement can all add value to your research in different ways
Participation
Participation is where patients or healthy volunteers take part in a research study (for example, a clinical trial). They are the subject of the study and the research is being done to them, not with them.
Participants are necessary to allow researchers to progress in their research.
If you are recruiting clinical trial or research participants, you can advertise this on the CRUK Clinical Trial Database. Get in touch.
Engagement
Engagement is where information and knowledge about research is shared with the public.
We rely on the research community to passionately share the progress that research is making to inspire further support and fundraising.
Examples of engagement include, but are not limited to:
- Lab tours
- Research open days
- Blogs
Involvement
Involvement is when patients use their experiences of cancer to help shape research, so that it is carried out with or by patients, rather than to or for them. You can consult, collaborate or partner with patients at all stages of the research cycle.
Examples of involvement include, but are not limited to:
- defining your research question
- planning and designing your research
- developing patient facing documents
- monitoring and disseminating progress
Research Patient Involvement Case Studies
When done well, patient involvement has lots of benefits to your work. 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. Some research types are easier to involve patients than others. However, patient involvement has the potential to bring benefits to all areas of research.
Stronger funding application
Involving patients will improve your research’s relevance and quality, resulting in a stronger funding application.
Relevance
Working with patients increases the relevance of research by focusing on what is important to them and will have the greatest impact for patients.
Quality
Involving patients encourages ongoing discussion about the best way to approach various aspects of your research. This enables continuous reflection, challenges assumptions and improves quality.
Impact
Patients can help you better understand and articulate your research's potential patient benefit and identify meaningful and impactful study outcomes.
Recruitment and retention
By involving patients in the research design and in the development of patient information and consent documents, you can improve the acceptability and feasibility of the study. This has been shown to increase sample donation, as well as recruitment and retention to research studies.
Ethics and transparency
Working with patients will highlight any ethical or sensitive issues that need to be mitigated. This will help if your research needs to go through ethics approval. Involving patients also increases transparency about how public funds are spent.
Motivation and focus
Involving patients can keep your research focused on what matters most and can increase your team's motivation.
Communication, interpersonal and facilitation skills
By working with patients you’ll strengthen your interpersonal, facilitation and communication skills.
Public engagement
Involvement helps raise awareness of the importance of your research. The people you involve will often become advocates for your research. They can help shape and deliver any engagement activities, helping to generate more public interest.
The biggest advantage of having the patient reps is that you get instant feedback to suggestions and a much greater ability to see your research from a patient's perspective. I have changed how I view all my research proposals since I attended the event. I try to incorporate some element of patient involvement in every project I work on now.
- Philip Berry - Senior Scientific Officer, Newcastle University
Many people affected by cancer believe that involvement is a way of giving back. They want to use their experience and knowledge to improve the lives of future patients.
Getting involved gives them the opportunity to meet new people, share experiences and learn new things. Many people enjoy being able to apply skills from their work life to patient involvement.
Being involved has given a new meaning to my life; it’s the best thing I’ve ever done.
Cancer Research UK is committed to developing and supporting high quality patient involvement. We're increasing our focus on patient involvement in the research we fund. We support meaningful patient involvement across different types of research, where it has a clear purpose and adds value.
You should consider involving patients and people affected by cancer if:
- the outcome of your research will impact on the lives of cancer patients or people affected by cancer
- any areas of your research will be public facing, including disseminating your research
- your research will have patients or public taking part as the subject of, or participant in, your research. Or you will be taking samples from patients or healthy individuals. This is especially relevant for clinical, population, social and some basic research
- there are ethical issues or implications associated with your research
If you’re unsure about if you should involve patients, then ask them. Working with patients to shape if and how you involve them is great practice. It helps you avoid making assumptions about what patients want to be involved in and where they can add value.
Involvement standards
For patient involvement to be meaningful and have the greatest benefits for your research we recommend you adopt the INVOLVE values and principles. The INVOLVE values and principles have been codeveloped by researchers, patients and involvement professionals to help you deliver best practice.
When involving patients, you should refer to the INVOLVE values and principles:
Values |
Summary principles |
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Respect |
Researchers and the public should show mutual respect for each other’s roles and perspectives, treating them as equals |
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Support |
Support everyone by providing access to resources, using plain English language, offering training and support |
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Transparency |
Be crystal clear and open about all elements of research projects and processes |
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Responsiveness |
Respond to all requests for clarifications and provide feedback on comments and alterations |
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Fairness of opportunity |
Provide opportunities for recruitment and contribution in a fair manner |
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Accountability |
Ensure everyone knows that they have a duty to take responsibility for their tasks |
We also recommend that you refer to the INVOLVE National Standards for Involvement and their INVOLVE top Tips when planning and delivering your involvement.
Patients and members of the public looking for guidance on being involved can also refer to the INVOLVE Top Tips and the INVOLVE Starting Out Induction Pack.
Statement of intent for patient and public involvement
Our statement of intent for patient and public involvement outlines how we will work with people affected by cancer to guide, influence and shape projects as they develop to increase our understanding of cancer. We will also 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.
Get started
Use the patient involvement toolkit for researchers to learn more about involving patients in your research. Use guidelines, tips and templates to plan, deliver and evaluate your patient involvement.