Patient (and public) involvement (PPI) describes how people living with medical conditions (patients) can become involved in research and advocacy activities. By working alongside scientists, clinicians, industry and/or regulators, the patient and their input can play an important role in contributing to and/or guiding the pathway to therapy development.
Research and advocacy activities span the entire lifecycle of this pathway such as from the very early stages in the laboratory where a research concept is explored (basic research and translational research) right through to clinical research efforts including clinical trials and finally regulatory approval and reimbursement discussions. For more detailed explanations on each of these areas of research please visit the Research Explained section by clicking the following link: Research Explained.
There are many ways in which patients can get involved in PPI. Some of the opportunities include setting the priorities for a research study or strategy, helping to make decisions on the most important study results and offering guidance on how to share research with the wider public. Activities may take place through a number of different settings including focus groups, team meetings or via post/email/phone/online forum.
Through such activities, patients and members of the public can share their own experiences and perspectives, which can help guide the decisions being made at every level of a research or advocacy activity. This information can make a real difference.
In working together, researchers and patients can make sure that research and advocacy activities are designed with the patient in-mind and are of the highest quality.
If you are living with a medical condition and are interested in PPI, please visit the ‘PPI for people living with sight loss’ section by clicking on the following link: PPI for People Living with Sight Loss.
For researchers who wish to learn more about PPI, please visit “PPI for researchers” for further information by clicking on the following link: PPI for Researchers.