Patient and Public Partnership: conducting research with patients and citizens
At the Luxembourg Research Clinic (LRC), we believe that research should be developed with patients and the public, not only for them.
Patient and public involvement in research (PPI) enables patients, caregivers and citizens to share their experience and perspectives with research teams. This contribution helps counsel researchers on how people live, identify needs that may not always be visible, and inform certain project decisions.
If you are looking to take part in a clinical study as a research participant, you are in the wrong place! Visit our Study Finder to explore the clinical trials and studies at the LRC. Here we explain a different way to get involved: as a patient or citizen partner helping shape how research is conducted.
What is PPI?
PPI refers to research conducted with or by patients and members of the public, rather than solely for them or about them.
Depending on the project and the role, they may contribute to:
- identifying research needs and priorities;
- providing feedback on the design of a study or on the demands placed on participants;
- reviewing and improving information and consent documents;
- making information clearer and more accessible;
- advising teams on recruitment and communication;
- contributing to the interpretation or dissemination of results;
- participating in an advisory committee or working group.
Patient partners receive the information, preparation and support they need to fulfil their role. This support is adapted to the project, their experience and their needs.
Patient partners do not replace researchers and do not necessarily participate in every stage of a project. They contribute knowledge based on their experience, complementing scientific and clinical expertise.
A partnership between different forms of knowledge
The experience of patients and caregivers can provide a different perspective on disease, care and participation in a study. This experience complements scientific and clinical knowledge and can help to:
- better take into account the needs of the people concerned;
- improve the design and acceptability of studies;
- anticipate certain practical or ethical challenges;
- strengthen the clarity and transparency of information;
- facilitate dialogue between research and society.
The form and level of participation may vary depending on the nature of the project and the contribution expected.
Patient partner or study participant?
It is important to distinguish patient partners from study participants.
- Study participant agrees to take part in research in order to enable the collection of scientific data.
- Patient partner shares their experience and contributes to discussions or certain decisions relating to the research.
These two roles are distinct and serve different purposes. Taking part in a study as a participant does not, on its own, constitute PPI.
Informing and engaging with the public
In addition to PPI, the LRC organises information and dialogue activities around clinical research. These enable members of the public to better understand research, ask questions and engage with researchers.
These activities may include:
Public events and debates
Creating opportunities for dialogue between patients, citizens, healthcare professionals and researchers.
Participatory workshops
Gathering different perspectives and collectively exploring questions related to research and health. When a workshop contributes directly to a research project or decision, it may also form part of a PPI approach.
Information and awareness campaigns
Raising awareness of clinical research, how it works and its role in improving care.
Dialogue with patient associations
Maintaining regular exchanges with patient associations in order to better understand their expectations and develop future collaborations.