Patient and public involvement (PPI) in research (bio medical or public health) means that a
research project is carried out “with/by” patients or the public. 2 Patients' opinions must have …

Patients with rare diseases often face difficulties in clinical care due to the low prevalence of
their diseases and the resulting healthcare professionals' lack of expertise. Valid and …

In recent decades, patient advocates have driven a sea change in their relationship with the
medical research and drug development sectors. Once seen as passive “subjects” and …

Background Patients' involvement (PI) in research is recognized as a valuable strategy for
increasing the quality, developing more targeted research and to speed up more innovative …

Patient involvement (PI) in determining medical research priorities is an important way to
ensure that limited research funds are allocated to best serve patients. As a disease area for …

Plain English summary Plain English summary PLM is an online platform that provides tools
for individuals to track their health and connect with other patients and while PLM has invited …

ABSTRACT BACKGROUND Patients with rare diseases have limited access to useful
information to guide treatment decisions. Engagement of patients and other stakeholders in …

Background There is increasing interest in actively involving patients in the process of
medical research to help ensure research is relevant and important to both researchers and …

Plain English summary Patients with rare diseases often help to develop new treatments for
their conditions. But once developed, those treatments are sometimes priced too high for …

International government guidance recommends patient and public involvement (PPI) to
improve the relevance and quality of research. PPI is defined as research being carried out …