Users’ Guide to Integrating Patient-Reported Outcomes in Electronic Health Records


This guide was developed to help researchers, clinicians, etc. incorporate and optimize patient-reported outcomes in electronic health records. (May 2017)

Patient-reported outcomes PCORI

The Use of Social Media in Recruitment to Research: A Guide for Investigators & IRBs

Harvard Catalyst Regulatory Foundations, Ethics, and Law Program

This guidance document is to facilitate the use of social media as a valuable recruitment tool in ways that are...

Clinical trials

Defining patient centricity with patients for patients and caregivers: a collaborative endeavour

BMJ Innovations

A series of initiatives was conducted by Astra-Zeneca to define patient-centricity and 10 important principles.


Recommendations for patient engagement in guideline development panels: A qualitative focus group study of guideline-naïve patients


Authors present recommendations emerging from an AHRQ-funded study of how to engage patients/consumers in panels developing guidelines for clinical care.

Clinical trials

Methodology Standards


Methodology standards for patient-centered research created or endorsed by PCORI's Methodology Committee.

Comparative effectiveness research PCORI

Patient Information Tool & Implementation Guide

National Health Council

This tool was developed to help patient organizations collect and organize issues of interest to potential medical product developers and...

Benefit-risk assessment Patient organizations Patient focused drug development

RARE Toolkits

Global Genes

Provides information and emerging best practices on a variety of topics related to living with a rare disease and rare...

Clinical trials Patient organizations Patient focused drug development

TRAIN Central Station


TRAIN Central Station is the online platform for venture philanthropy in medical research, where foundations that fund research share best...

Patient organizations

Patient Group Organizational Expertise & Assets Evaluation Tool

Clinical Trials Transformation Initiative (CTTI)

This tool provides criteria for assessing patient organization to contribute to stages of medical product development across the total product...

Patient organizations

Key Considerations for Developing and Integrating Patient Perspectives in Drug Development (with PPMD)


This report examines value of and methods for conducting patient preference studies using the work done by Parent Project Muscular...

Patient preference

Value Framework Get-Ready Checklist for Patient Organizations

National Health Council

This checklist educates and prepares patient organizations to engage in the conversation about value and the development of value frameworks.

Value and coverage Healthcare delivery Patient organizations

Meaningful Consumer Engagement: A Toolkit for Plans, Provider Groups, and Communities

Community Catalyst

This toolkit includes resources on making consumer engagement a top priority in order to foster an atmosphere of collaboration and...

Healthcare delivery