For Patients and the Public

What is Patient and Public Involvement (PPI)?

Patient and public involvement (PPI) in clinical research can be defined as research that is carried out with or by patients or members of the public instead of to, about, or for them.1

It means that patients and members of the public are involved in a research project or initiative as equal partners, for example by:

  • working with research funding organizations to prioritize proposed research projects according to their relevance for those affected by the research
  • providing advice on a specific project as a member of a decision-making body
  • contributing to research information materials by providing feedback on them or helping develop them.2

1 Involve
2 Swiss Clinical Trials Organization (SCTO)

Why should I get involved?

Patients and members of the public bring important perspectives to clinical research. Persons with lived experiences of a condition or disease help researchers understand what really matters in care and outcomes. At the same time, people without prior experience can offer fresh ideas that make studies stronger. By sharing their experience, viewpoint, and opinions, patients and the public help to make sure that research is not only scientifically rigorous but also relevant, ethical, and grounded in real-world needs. 

If you have personal experience with a condition or disease (as a patient, relative, or carer) or are a member of the public simply interested in clinical research, you can become a PPI contributor and join the DCR PPI panel.

As a PPI contributor, you can, for example:

  • share your experiences and opinions in PPI panel meetings, forum or questionnaires
  • take part in working groups or trial steering committees
  • give advice to research teams
  • help communicate research results to patients and members of the public

Do I need research experience to get involved?

Being a PPI contributor doesn’t require prior research experience per se. A patient or carer can bring personal experience with medical care, diseases, or treatments, offering a unique perspective on research. Even as a member of the public, you can provide input on areas that may need clearer explanations for a general audience.

All PPI contributors receive 4 online module training, including a short introduction to clinical research as well as a PPI contributor guide to support their role in the panel.