The active involvement ofpatients in clinical oncologyresearch

Abstract

Patient and community engagement across all stages of clinical research development is now widely recognized as an essential component. This activity, referred to as Patient and Public Involvement (PPI), is distinct from participating as a study subject. Since 2006, the European Medicines Agency (EMA) has acknowledged the importance of the interaction between patients, consumers, and those involved in the research and development of new therapies.
Patients can contribute to clinical research by identifying their needs, helping to shape study design and assessment
schedules, thus improving feasibility and acceptability. They are also involved in the preparation of the information materials for patients, informed-consent documents, patient diaries, quality-of-life questionnaires, and the lay summary that must be uploaded on the national clinical-trial portal within twelve months after study completion.
The article describes ongoing and planned initiatives at the Istituto Oncologico della Svizzera Italiana in the field of PPI. These include a training course for patients on the fundamentals of clinical research, a public patient forum to promote Patient and Public Involvement, and a training program for healthcare professionals on patient engagement in research. The Area Formazione Medica e Ricerca and the Clinical Trial Unit actively promote PP and are working to extend these activities to other areas of biomedical research.