McPin Foundation
The McPin Foundation exists to transform mental health research by putting the lived experiences of people affected by mental health problems at the heart of research methods and the research agenda.
Patient-Centered Outcomes Research Institute
PCORI funds studies that can help patients and those who care for them make better-informed healthcare choices.
The Art of Empathy: Employing the arts in social inquiry with poor working-class women
This article looks at how the arts can be employed in participatory social research with poor working-class women as an innovative approach to collecting data as well as a powerful means of disseminating research findings. It questions traditional means of knowledge production and suggests that the use of art in this context challenges many of the assumptions inherent in sociological inquiry.
Developing a Patient-Centered ISHAPED Handoff With Patient/Family and Parent Advisory Councils
Our hospital system used Lean strategies to develop a new process for the change-of-shift bedside handoff titled ISHAPED (I = Introduce, S = Story, H = History, A = Assessment, P = Plan, E = Error Prevention, and D = Dialogue). Several teams collaborated with a Parent Advisory Council and a Patient/Family Advisory Council to design a study to explore patient perceptions of the handoff.
Lessons Learned from a Systems Approach to Engaging Patients and Families in Patient Safety Transformation
Background
Effective patient- and family-centered care requires a dedication to engaging patients and family members in health system redesign to improve the quality, safety, and experience of care. Provided here are lessons learned six years after establishing an infrastructure of patient and family advisory councils (PFACs) focused on improving health care quality and safety.
Context
Exploring Meaningful Patient Engagement in ADAPTABLE (Aspirin Dosing: A Patient-centric Trial Assessing Benefits and Long-term Effectiveness)
Background:
Genuine patient engagement can improve research relevance, impact and is required for studies using the National Patient-Centered Clinical Research Network including major multicenter research projects. It is unclear, however, how best to integrate patients into governance of such projects.
Methods:
Experiences of an HCV Patient engagement group: a seven-year journey
Historically, few publications exist where patient engagement in clinical studies is a driving force in study design and implementation. The Patient Centered Outcomes Research Institute (PCORI), established in 2010, employed a new model of integrating stakeholder perspectives into healthcare research.
Strategically Advancing Patient and Family Advisory Councils in New York State Hospitals
This report describes the landscape of PFACs in New York State hospitals, as well as their prevalence and variation in characteristics. The report also explores PFACs’ performance and impact, not only on hospital strategy and operations but also on the quality and safety of care.
Diabetes stories: use of patient narratives of diabetes to teach patient-centered care
A critical component to instituting compassionate, patient-centered diabetes care is the training of health care providers. Our institution developed the Family Centered Experience (FCE), a comprehensive 2-year preclinical program based on longitudinal conversations with patients about living with chronic illness. The goal of the FCE is to explore the experience of illness from the patient’s perspective and ultimately to incorporate this perspective in clinical practice.
Patient as Teacher
The Patient as Teacher program uses this patient-centred approach to promote and foster humanism in medicine. Patient-driven sessions are led by 2-3 cancer survivors who share their personal stories, experiences with the health care system, and perspectives on how their illness has impacted their lives. Students listen, engage in dialogue, and ask questions. This collaboration actively involves patients and survivors in the education process as partners in teaching, feedback, and evaluation.