Patient and Public Involvement and Engagement
Science produces better results when patients are part of it—not just as donors of biological samples, but as partners who help shape research questions, review study designs, and communicate findings to the public in ways that make sense.
This is the core idea behind Patient and Public Involvement and Engagement—PPIE. At P4Health, PPIE is not an add-on to the research program. It is one of the five pillars on which the center was built.
Why PPIE matters in precision medicine
Precision medicine—medicine tailored to the individual—depends on data. And biological data, in biomedicine, means samples: blood, tissue, genetic material, health records. Collecting biological samples at the scale required for precision medicine is only possible when patients trust the institutions requesting them, understand the value of the research, and have a meaningful voice in how their samples and data are used.
P4Health works on cancer and brain disorders—diseases with the highest societal burden. Cancer mortality in Poland is among the highest in the EU. Neurological and psychiatric disorders affect millions of people across Europe, placing an enormous burden on families and healthcare systems. In both areas, better research depends directly on access to well-characterized patient samples—and that access depends on public trust.
PPIE is how P4Health builds and sustains that trust.
How patients and the public can be involved
Involvement at P4Health spans the entire research cycle.
Planning stage
Patients and patient organization representatives help researchers identify which questions actually matter—shaping research priorities and ensuring studies address real diagnostic and therapeutic gaps.
Study design
Patients co-design procedures, review participant information materials for clarity, and provide feedback on aspects of a study that may be burdensome or unclear.
Analysis and interpretation
Patients contribute perspective on what findings mean for people living with a condition—a form of interpretation that scientific analysis alone cannot provide.
Communication
Patients and public representatives help translate research findings into language that is meaningful and accessible beyond the scientific community.
PPIE and biobanking
Biobanking—the systematic collection, processing, and long-term storage of biological material—is the foundation of P4Health’s Clinical and Biobanking Platform. P4Health’s PPIE program works with patient organizations and clinical partners to create understanding and trust—through meetings, campaigns, educational events, and transparent communication about how biobank material is governed and used.
The goal is to build a biobank that is not only scientifically excellent, but also representative, trusted by the public, and founded on a genuine partnership between researchers and the individuals who contribute their biological samples and data.
Patient Organization Meetings
P4Health meets regularly with patient organizations as part of its PPIE program. These events bring together patient organization representatives, clinical partners, and P4Health researchers to share updates on ongoing research, discuss biobanking procedures, and give patient perspectives a direct role in research planning.
Get involved
If you represent a patient organization and are interested in partnering with P4Health on PPIE activities, contact us—particularly if your organization works in oncology, neurology, or psychiatry.
Contact: p4health@port.lukasiewicz.gov.pl