Background Conducting research in partnership with stakeholders (eg policy-makers,
practitioners, organisations, patients) is a promising and popular approach to improving the …

Background Health research is evolving to include patient stakeholders (patients, families
and caregivers) as active members of research teams. Frameworks describing the …

ABSTRACT BACKGROUND Patients and healthcare stakeholders are increasingly
becoming engaged in the planning and conduct of biomedical research. However, limited …

A disorder is considered a rare disease if it affects 1 in 2000, hence, while independently
unique, collectively, these conditions are quite common. Many rare diseases are diagnosed …

Purpose To provide an overview of PCORI's approach to engagement in research. Methods
The Patient-Centered Outcomes Research Institute (PCORI) was established in 2010 to fund …

Background Funders encourage lay‐volunteer inclusion in research. There are controversy
and resistance, given concerns of role confusion, exploratory methods, and limited evidence …

Purpose Since 2012, PCORI has been funding patient-centered comparative effectiveness
research with a requirement for engaging patients and other stakeholders in the research, a …

Background With the sharp increase in the involvement of patients (including family and
informal caregivers) as active participants, collaborators, advisors and decision-makers in …

Objectives Lack of clarity on the definition of “patient engagement” has been highlighted as
a barrier to fully implementing patient engagement in research. This study identified themes …

Patient and family engaged care (PFEC) is care planned, delivered, managed, and
continuously improved in active partnership with patients and their families (or care partners …