Patient and Public Involvement

We know that the best quality research happens when people with Crohn’s and Colitis are involved in shaping research.  You can involve them at every stage of research.   If you'd like help finding people to involve in your study, we can help by advertising your study.

Here are some steps and strategies that you can use to effectively involve people living with IBD in your research projects:

Identify the Purpose and Scope of Involvement:

• Clearly define the objectives and goals of involving patients in your research project.
• Determine which stages of the research process (e.g., design, data collection, analysis, dissemination) are most suitable for patient involvement.

Recruitment and Selection:

• Identify and recruit patients or service users who have a stake in the research topic or condition under study.
• Consider diversity and inclusivity to ensure a broad range of perspectives.

Training and Support:

• Provide training and support to patients to help them understand their role in the research and the methods used.
• Offer guidance on research ethics, data collection, and other relevant aspects.

Co-Design and Collaboration:

• Collaborate with patients in the design phase to co-create research questions, methodologies, and outcomes.
• Foster a partnership approach where patients' input is valued and respected.

Ethical Considerations:

• Ensure that ethical considerations, including informed consent, confidentiality, and participant protection, are addressed when involving patients in research.Feedback and Iteration:

Continuously seek feedback from patient partners throughout the research process to make adjustments and improvements.

• Be open to making changes based on their input.

Communication and Engagement:

• Maintain open and clear communication with patients throughout the project.
• Keep them informed about the progress of the research and involve them in decision-making.

Data Collection and Analysis:

• If applicable, involve patients in data collection and analysis, ensuring they are well-trained and supported in these tasks.
• Encourage patients to provide their unique perspectives during data interpretation.

Dissemination and Knowledge Translation:

• Collaborate with patients in disseminating research findings to ensure they are accessible and understandable to a wider audience, including the patient community.
• Use various communication channels, such as plain language summaries and patient-friendly formats.

Evaluation and Reflection:

• Reflect on the PPI process and evaluate its effectiveness in achieving the research objectives.
• Seek feedback from patients about their experiences and make improvements based on their input.

Recognition and Compensation:

• Recognize and acknowledge the contributions of patient partners, both in the research process and in publications or presentations.
• Provide compensation or reimbursement for their time and expenses, respecting ethical guidelines.

Documentation and Reporting:

• Document the involvement process and the impact of patient input on the research.
• Report on PPI activities in research publications and grant proposals

Remember that patient involvement in research is not a one-size-fits-all approach, and the level of involvement can vary depending on the research project and the preferences and capabilities of the patient partners. Effective involvement requires a commitment to genuine collaboration, transparency, and a willingness to adapt the research process based on patient feedback and insights.

Useful Links and Resources

We have collated some useful links and resources that you might find helpful when thinking about involving people with lived experience of IBD in your research.