Users’ Guide to Integrating Patient-Reported Outcomes in Electronic Health Records
PCORI
This guide was developed to help researchers, clinicians, etc. incorporate and optimize patient-reported outcomes in electronic health records. (May 2017)
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...
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
PLOS One
Authors present recommendations emerging from an AHRQ-funded study of how to engage patients/consumers in panels developing guidelines for clinical care.
Methodology Standards
PCORI
Methodology standards for patient-centered research created or endorsed by PCORI's Methodology Committee.
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
Catalog of Methods for Assessing Patient Preferences for Benefits and Harms of Medical Technologies
Medical Device Innovation Consortium (MDIC)
This documents summarizes the methods available for quantitative assessment of patient preferences.
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
FasterCures
TRAIN Central Station is the online platform for venture philanthropy in medical research, where foundations that fund research share best...
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...
Key Considerations for Developing and Integrating Patient Perspectives in Drug Development (with PPMD)
BIO
This report examines value of and methods for conducting patient preference studies using the work done by Parent Project Muscular...
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...