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Handbook for Patient Engagement Resource Title
Trust and Patient-Centeredness Workgroup: An Introductory Handbook for Patient Engagement Throughout the Patient-Centered Clinical Decision Support Lifecycle

This handbook provides guidance and resources for patient engagement in patient-centered clinical decision support.

Developed by the AHRQ CDSiC Trust and Patient-Centeredness Workgroup, this handbook provides guidance on the best methods to engage patients in the development of patient-centered clinical decision support tools.

Involving patients, caregivers, and care teams in the development and implementation of patient-centered clinical decision support (PC CDS) can ensure that decision support tools are focused on critical information needs and that the delivery of information is in a manner and format that is most helpful to users. Engaging patients is especially important to creating CDS that is responsive to their needs. While PC CDS continues to grow and evolve, the role of patient engagement in developing these tools remains limited. PC CDS researchers, developers, and implementers may require guidance on the best methods to engage patients, as well as easily accessible resources. The goal of this introductory handbook is to bridge this gap by providing guidance and resources.

About the Handbook

This brief handbook provides a practical resource to:

  1. Understand how patient engagement fits into the stages of the PC CDS lifecycle.
  2. Learn about methods and resources that can be used to engage patients within these stages.

While this handbook is not exhaustive, it serves as an introductory resource for the field and was developed through a targeted review of peer-reviewed and grey literature for patient engagement methods and resources, as well as relevant examples of patient engagement throughout the PC CDS lifecycle. The literature findings were validated and supplemented with input from experts in CDS, health information technology (IT), and patient engagement.

How to Use the Handbook

Patient partners, researchers, and developers involved in the creation of PC CDS can use this handbook to better understand what methods can be used to engage patients to develop or implement PC CDS. Stakeholders can find guidance in the handbook related to all stages of the PC CDS lifecycle, including:

  • Identifying and choosing evidence to inform PC CDS through consensus and partnership.
  • Developing PC CDS through co-design processes.
  • Implementing PC CDS with patient co-deployment.
  • Measuring PC CDS impact through processes such as group concept mapping.

Suggested Citation: Desai PJ, Zott C, Gauthreaux N, Dobes A, Hongsermeier T, Cope E, Dungan R, Dullabh PM, and the CDSiC Trust and Patient-Centeredness Workgroup: An Introductory Handbook for Patient Engagement Throughout the Patient-Centered Clinical Decision Support Lifecycle. Prepared under Contract No. 75Q80120D00018. AHRQ Publication No. 23-0085. Rockville, MD: Agency for Healthcare Research and Quality; September 2023.