What should I consider before joining a Patient and Public Involvement and Engagement group?

Every public involvement group works a bit differently, so the time and effort needed can vary. Before you join, make sure you understand what’s expected so you can decide if it’s right for you.

You might only need to attend a few meetings each year and give feedback on documents. Or you might be more involved, helping to design and run a research project. Some projects last a few months, others can go on for a year or more.

Make sure you get all the details before you agree to join. Ask for a document called the Terms of Reference (if there is one) which explains how the group works. Also ask what happens if you want to leave the group later—especially if your situation changes or you’re not happy.

Things to Think About

Time commitment

• Meetings: You may be asked to join regular group discussions or workshops
• Preparation: You might need to read documents or give feedback between meetings
• Project length: Some projects are short, others can last for years—check how long your involvement is expected to be

Working with others

• Talking to researchers: You’ll share your experiences and ideas
• Teamwork: You’ll work with other public contributors and need to be respectful and open-minded
• Giving feedback: You may help review documents or suggest how research findings should be shared

Privacy and ethics

• Confidentiality: You might see or hear sensitive information, so it’s important to keep it private
• Ethical awareness: Especially if you’re helping review patient data or research results

Learning and support

• Training: You’ll likely be offered an introduction to research and how things work. Other training in specific areas might also be offered
• Ongoing learning: You’ll be encouraged to keep learning about the project and public involvement 

Speaking up for others

• Representing the public: You’ll share views from your community or patient group
• Promoting inclusion: You’ll help make sure different voices are heard 

Practical stuff

• Expenses and payment: You may be paid for your time and/or reimbursed for your travel
• Accessibility: Make sure meetings and materials are easy for you to access—this could mean large print, plain language, or online options