User's Guide

This User's Guide was developed by a team of researchers and patient and family advocates. For three years, we 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, we 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.


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Learning Exercises

In addition to the User's Guide, we have provided separate versions of two of the learning exercises.

Learning Exercise 1: Is my healthcare system a learning healthcare system?

Learning Exercise 2: Have you been engaged in one of your healthcare system's learning activities?


Research reported in this Guide was funded through a Patient-Centered Outcomes Research Institute® (PCORI®) Award (ME-1507-31307). The views presented in this work are solely the responsibility of the authors and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute® (PCORI®), its Board of Governors or Methodology Committee.

Cite as: Joffe S, Gleason K, Grob R, McGraw S, McLean P, Solomon M. “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 University of Pennsylvania Perelman School of Medicine, Philadelphia, PA; 2019.

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