Patient involvement toolkit for researchers

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.