Strengthening Healthcare through Patient and Family Engagement in Quality Improvement and Research: A User’s Guide

Steven Joffe’s study on the governance of learning healthcare systems has recently developed “Strengthening Healthcare through Patient and Family Engagement in Quality Improvement and Research: A User’s Guide for Patient and Family Advisors and Their Learning Healthcare Systems.”  The guide is primarily intended for patients and family members, acting on their own or within Patient and Family Advisory Councils or other committees, who seek to partner with their healthcare systems to improve care.  It can be found at www.learningwithpatients.org.

This guide was developed by a team of researchers and patient and family advocates. For three years, this team explored how healthcare systems learn to improve their care, how they share what they have learned with other systems, and how patients and family members can partner in this work.  To do this work, they interviewed almost 100 healthcare system leaders and patient/family leaders from 16 learning healthcare systems and conducted focus groups with 77 patients, parents, and other family members. 

The guide is primarily intended for patients and family members, acting on their own or within Patient and Family Advisory Councils (PFAC) or other committees, who seek to partner with their healthcare systems to improve care through quality improvement and research. The guide can also be used by learning healthcare system personnel who seek to partner with patients and families to improve care.