What is Patient and Public involvement (PPI)?

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Patient and Public Involvement (PPI) in research is a process that involves actively engaging patients, service users, and members of the public in various stages of the research process. For us, that's making sure people living with Crohn's and Colitis can share their insights and experience to help shape and direct research.

The main goal of PPI is to ensure that research is more relevant, meaningful, and beneficial to the people it ultimately affects. PPI is often used in healthcare and medical research in particular.

PPI is the philosophy that research is carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them. PPI does not refer to the recruitment of participants to a study/medical research/clinical trial.

Here are some key aspects of Patient and Public Involvement in Research

Partnership: PPI is not about simply including patients and the public as study subjects but as active partners in the research process. They work alongside researchers, providing valuable insights and perspectives.
Research Design: Patients and the public can contribute to the design of research projects, helping to shape research questions, methodologies, and outcomes. Their involvement ensures that research is focused on issues that matter most to those it affects.
Data Collection: In some cases, patients and the public can be involved in data collection. They may help conduct surveys, interviews, or focus groups, bringing their unique viewpoints to the data-gathering process.
Data Analysis: PPI can extend to data analysis, where patients and the public may help interpret findings and draw meaningful conclusions from the research.
Dissemination: Those involved in PPI can also contribute to the dissemination of research results, making them more accessible and understandable to a broader audience.
Ethics and Governance: Patients and the public can also have a role in the ethical review and governance of research projects, ensuring that they are conducted with the highest ethical standards.
Education: PPI often involves educating patients and the public about research methods and objectives, empowering them to contribute effectively.
Diversity and Inclusivity: PPI aims to represent a diverse range of perspectives and backgrounds, ensuring that research considers the needs and concerns of various communities.

Be Visible – Egality film

Representation is crucial in health research — without it, healthcare treatments and services may not be as safe, accessible, or effective for underrepresented groups. Your involvement in our research means we’re focusing on what’s important to everyone affected by Crohn’s and Colitis.

To address this, we have partnered with other health charities to create a compelling film that highlights the importance of diversity in research. This spoken word film explores why involving people from diverse ethnic backgrounds in Patient and Public Involvement (PPI) is essential for improving health treatments and services for everyone.

If this has inspired you, take a look at our current opportunities to get involved with research on our Take Part in Research and Shaping Research web pages.

You can also watch the recording of our Patient Involvement in Research Day 2024 which took place in November: IBD patient involvement in research day 2024

PPI is based on the principle that involving those who will be directly impacted by research leads to more relevant, ethical, and high-quality research. It helps ensure that research addresses real-world issues and improves the overall quality of research outcomes. Additionally, it promotes transparency and trust between researchers and the communities they serve.

At Crohn's & Colitis UK, we help people living with IBD to get involved via our Shaping Research Opportunities and our Research Champions programme. We also expect researchers who apply to us for grant funding to have involved, or have a plan to involve people with Crohn's or Colitis in their projects.