As patient engagement in research becomes increasingly common, it has grown important
to develop best practices for its use. One aspect of patient engagement that remains …

Descriptive title Parents of children with rare diseases face pervasive challenges in meeting
medical and social care needs. Existing research on the parents' experience of caring for a …

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 …

Background: Parents of children with rare diseases face pervasive challenges in meeting
medical and social care needs. Existing research on the parents' experience of caring for a …

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 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 …

Patient and family engagement has become a widely accepted approach in health care
research. We recognize that research conducted in partnership with people with relevant …

If your lifestyle has become overwhelming while caring for a medically complex child, the
idea of being a rare disease advocate can seem daunting." How do I add advocating for my …

Background Patient engagement is increasingly being recognized as a critical component of
health research; however, institutional models for building infrastructure and capacity for …

In the last decade, international efforts have been focused on public engagement, to foster
public involvement in the affairs and decisions of policy-makers and scientists, in order to …