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.
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.
We know it can be difficult to live with, or support someone living with these conditions. But you’re not alone. We provide up-to-date, evidence-based information and can support you to live well with Crohn’s or Colitis.
Our helpline team can help by:
Providing information about Crohn’s and Colitis.
Listening and talking through your situation.
Helping you to find support from others in the Crohn’s and Colitis community.
Signposting you to specialist organisations.
Please be aware we’re not medically or legally trained. We cannot provide detailed financial or benefits advice or specialist emotional support.
Please contact us via telephone, email or LiveChat - 9am to 5pm, Monday to Friday (except English bank holidays).