In this definition, the “public” refers to patients, potential patients, caregivers and people who use health and social care services as well as people from organizations that represent people who use services.
Terminology regarding PPI is still challenging, with little consensus as to whether relevant groups of individuals should be referred to as “patients”, “clients”, “consumers”, “service users”, “the public”, or by some other name.
Throughout this site “patient” will refer to any person who has (had) recourse to cancer care, in the course of which he or she develops experiential knowledge. “Patient” can include actual or former patients, caregivers and people who used cancer care services.
Discover the SCCL-PPI model - developed for the specific context of oncology research in French-speaking Switzerland and based upon the guiding principles of PPI.
Why involve patients and the public in research?
Despite the fact that each project might have specific reasons and objectives to involve patients and the public, there are some general principles that apply (adapted from INVOLVE, 2021).
- Democratic principles . A lot of research is supported by public funding. Public involvement in research is an intrinsic part of citizenship, public accountability and transparency. People who are affected by research have a right to have a say in it by providing the opportunity to influence research that is relevant to them.
- Provide a different perspective . Patients and the public will bring their own perceptions, expertise, and lived experience (e.g. disease, impact of treatments) that may differ from those of the researchers and professionals.
- Improve research quality and relevance . By consulting the end user, PPI ensures that research focuses on outcomes that are important to the patient and the public. Public involvement can make research more relevant, for example through the identification of new research ideas or prioritizing topics, therefore ensuring that research is focused on what matters to people; or helping to redesign and clarify the research. These improvements can help foster recruitment and retention of participants by ensuring that the ways of communicating and research methods
are sensitive to the needs, customs and circumstances of the community.
- Make research ethical . PPI plays an important role in producing good study participant information sheets and shaping the informed consent process. It is more likely that potential participants understand the research and potential risks thus making the consent genuinely ‘informed’. PPI improves the experience of participating in research by ensuring that the design of the study respects and meet the needs of the participants (i.e. avoid burden with lengthy questionnaires, reduce unnecessary appointments or tests, and assure coverage of travel or other expenses).
- Major funding bodies and scientific publications encourage (if not require) PPI . In an effort to help advance PPI in healthcare and health research, journals like the British Journal of Medicine (BMJ) request to include a Patient and Public Involvement Statement as part as their patient partnership strategy to promote the co-production of their content.
In Switzerland, the Swiss National Science Foundation (SNSF) involved representatives of patients and the public in the evaluation process of the Investigator Initiated Clinical Trials (IICT) program to ensure that the projects addressed questions that are important to society but not a priority to industry.