Patient and Public Involvement (PPI)
A new initiative is giving greater consideration to patient experiences and opinions in future medical treatments. This initiative, known as patient and public involvement (PPI), can apply throughout the research cycle, from the very beginning of the research plan all the way to the dissemination of the research results. To promote PPI in Japan, AMED (Agency for Medical Research and Development) has published a guidebook.
Why is PPI required? One important point is to bring new awareness to issues from the perspective of patients and the public that are difficult for researchers to notice. I had the valuable opportunity to apply my experience and knowledge to clinical research by working with visually impaired patients who told me that there are doctors who can explain concepts lucidly without relying on visual cues. I consulted experts of visual impaired rehabilitation, audio guides, and ophthalmologists, and the visually impaired themselves. As a result, we prepared supplementary audio materials that use homonyms, technical terms, and sound effects to explain these concepts.
From this experience, I came to realize the importance of cooperation with researchers, patients and the general public, and am happy to make even a modest contribution to PPI.