Research in 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 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)

The DCR is doing research on the most effective way to conduct PPI. Projects are underway and further links here will follow.

Why is PPI in clinical research important?

Partnering with patients and members of the public is a key strategy in clinical research for enhancing understanding and supporting patient needs. This collaboration allows researchers to tailor the research specifically to those directly affected.

Patients' perspectives and experiences offer valuable insights into clinical study opportunities, enhancing the quality, efficiency, and impact of research.

  • When planning research projects, evidence suggests involving PPI contributors can improve recruitment and retention of clinical trial participants (Crocker et al., 2018).
  • By recognizing that active involvement in research extends to individuals directly affected by clinical research outcomes and members of the public, PPI aligns with current ethical considerations.
  • By actively involving patients and the public, clinical studies become more efficient and effective.

Clinical researchers who engage patients and members of the public can help ensure clinical research projects are person-friendly and consider the needs and priorities of people affected directly or indirectly by the diseases or conditions under study.

For these reasons, more and more funders, such as the Swiss National Science Foundation’s (SNSF) Investigator-Initiated Clinical Trials (IICT) program, encourage researchers to engage people during clinical research project phases. 

How is PPI put into practice?

PPI is put into practice through various methods, including PPI contributors discussing, helping make decisions, and occasionally doing research to enhance study relevance, design, conduct, and governance. PPI contributors can meet with researchers and their teams at any stage of the research project. They answer questions or make practical contributions to research projects.

However, no ‘one-size-fits-all’ approach works. Flexibility is key to tailoring patient engagement and involvement to fit topics, research questions, methods, and available resources.

For example, PPI contributors can

  • Identify patient and research participant needs to help researchers identify priorities.
  • Influence what research questions are most relevant to answer for affected people.
  • Provide feedback on study procedures and examinations to make the study more pleasant and easier for study participants.
  • Read, create, or test participant information so it is easy to understand.
  • Help interpret research results and communicate them in an understandable way, understandable for affected people and the public.
  • Motivate or encourage affected people to participate in clinical trials.

Usually, PPI contributors participate during group or individual interviews or at study panel meetings with researchers and their teams in one group. The study panel meetings are sometimes offered in person or online. The study panel meets several times a year. Yet, it depends on research project demands and whether the project is awarded funding.

What are PPI study panels?

PPI study panels are formed with two kinds of PPI contributors: patients and members of the public. PPI contributors provide insights and perspectives to researchers on various clinical trial aspects.

PPI study panels

  • help ensure patient-centered research
  • consider needs, preferences, and experiences of individuals directly affected by research
  • advise researchers on aspects of their projects, including study design, recruitment strategies, patient information materials, and sharing research findings.
  • assist in reviewing research proposals, providing feedback on study protocols, and identifying research priorities from patient perspectives.

DCR maintains a PPI study panel for consultation by researchers for vetted projects and supports interested researchers forming PPI study panels (PPI Consultation and Services).

Where can I learn more about PPI?

The Swiss Clinical Trials Organisation provides resources, such as templates and guidance documents, for facilitating collaboration between researchers and PPI contributors.

How does DCR support clinical researchers who implement PPI?

DCR provides personalized assistance to researchers, guiding them in integrating PPI into every phase of their clinical studies.

Explore our PPI Consultations and Services to discover how DCR can assist you in implementing PPI in your research project.