Including the Patient Voice

A guide to engaging the public in programs and policy development

Nihil de nobis, sine nobis is a Latin phrase meaning “Nothing about us, without us.” And yet many organizations committed to including community members — health care providers, government agencies, and others — find it challenging to incorporate patient or community representatives into their work consistently and successfully.

A growing body of evidence suggests that patient and family engagement can improve the safety and quality of care. We now know that effective engagement leads to better health outcomes and increased patient satisfaction.

And yet many organizations committed to including patients in their work — health care providers, government agencies, and others — find it challenging to do so consistently and successfully. Many health care systems have committed to patient engagement in the doctor’s office, but are unsure how to incorporate it into program and policy development.

This guide was created to help your organization include the voices of those who use the health care system in your work and advisory groups including:

  • expert panels,
  • quality improvement committees,
  • task forces, and
  • Patient and Family Advisory Councils.

Decisions made by health care organizations affect more than just the patients and staff within their four walls which is why it is important to involve not just current patients, but also family members and members of the general public. In this guide use the words “patients,” “community members,” or “members of the public” interchangeably as a reminder to include a variety of voices.

The Six Essential Elements were gleaned from a number of reputable sources, as well as from recent experiences by the Betsy Lehman Center including members of the public in our expert panels and other convening activities.

We continue to learn from each community adviser with whom we are privileged to work and expect this guide will grow as a knowledge-base and resource over time. For now, we wish to share it more broadly in the hope that it will help you and other organizations expand and refine your capacity to include these essential voices in the important work that you do. Download the guide or follow the links below to get started.


Set Goals for Engagement


Gain Support and Prepare


Identify and Recruit Advisers


Orient Advisors


Facilitate an Engaging Process


Get Feedback and Iterate