Patient Engagement in Family Medicine: A Conference to Encourage Patient-Centered Outcomes Research

The value of engaging patients in care and research is accumulating. Patients’ knowledge, skills and behaviors wield an enormous influence on healthcare outcomes. They bring essential knowledge and experience that is unique and essential to clinical and translational research.
Patients are rarely asked about their preferences regarding what critical research questions should be answered. The result is a substantial misalignment between what matters most to patients and what investigators study. Patient exclusion has diminished the applied value of research and the unacceptably slow adoption of evidence-based care.  

Study Description and Methods

The goal of the Patient Engagement in Family Medicine Conference is to develop nimble and well-informed steps to make “next day” changes that participants can implement in clinical settings to encourage and/or establish patient engagement that ultimately results in readiness to participate in PCOR. Rather than wait for the “perfect” solution, the key objective of the meeting is to offer participants distilled, simple, yet meaningful steps they can adopt quickly. These steps also must be easy and accomplished at little cost. If these engagement “next day” changes occur, a corollary outcome over time is an increase in practice readiness to participate in patient-centered outcomes research. This contributes to more widespread engagement of practicing clinicians in primary care research and durable partnerships between practices and the patients they serve. Increasing practice and practice-based research and network readiness for PCOR depends on establishing engagement infrastructure that supports patient and family engagement in all healthcare settings.

Specific Aims and Objectives

The specific aims of the project are to:

1. Collect current family medicine practice-based patient and community engagement models: In year one, to prepare for the conference, the team will systematically assess the current state of patient engagement in family medicine as it influences readiness to participate in PCOR and areas of focus for the conference.

2. Convene the conference planning committee and develop the conference agenda: Based on the breadth and diversity of patient engagement models revealed and described during the first phase of this project, the project team will be able to identify leading practices and keynote discussion leaders/speakers for the conference. The project team will develop a conference planning committee and connect with individuals who will agree to join the project and participate on the conference from identified and interested physicians, practice-engaged investigators and patient leaders/collaborators. The conference planning committee will develop a plan to use novel, interactive approaches to enhance engagement and participation before, during, and after the conference among patients, clinicians, and investigators.

3. Widely share subsequent engagement processes: The output of the conference will result in ideas or practices that are practical, easily adopted, and improvement oriented. The project team anticipates being able to share methodologies that have a high potential impact to deliver patient-engaged and patient-informed care while simultaneously nurturing a commitment by practices to become involved in comparative effectiveness research in primary care.


This study will be conducted from January 2017 through December 2018.


We are currently in phase I and collecting patient engagement models.

Key Findings and Publications

Contact Information

For additional information about this study, please contact:

Mindy Spano
Project Coordinator
1-800-274-2237 x3178

Jennifer Carroll, MD, MPH
Principal Investigator

This study is funded by grants from the Patient-Centered Outcomes Research Institute (PCORI)