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Tag: Patient organizations

This online library aims to help users find a variety of annotated resources about patient engagement to help them launch patient-centered efforts, enhance existing programs or identify where more work is needed. To suggest an item to be included, contact Taylor Cusher of FasterCures here.

Patient-Reported Outcomes: Design with the End in Mind


FasterCures asked a multi-stakeholder group to discuss PRO-related challenges and opportunities across R&D, starting with the perspective of patients. 

Patient-reported outcomes Patient organizations

Patient Engagement Quality Guidance

Patient Focused Medicines Development

A practical guide to planning, developing and assessing the quality of patient engagement activities and projects through the development and...

Patient organizations

From Aspiration to Application: 5 Years of Patient-Centricity


FasterCures has mapped nearly 100 multi-stakeholder initiatives producing frameworks, methods, toolkits, draft regulatory guidances, training programs, and case studies.

Patient organizations

Identifying and Delivering the Essential Elements of Patient-Centered Cancer Care

Livestrong Foundation

Seven building blocks and 23 elements of patient-centered cancer care are presented as an outcome of research from 150 sources...

Healthcare delivery Patient organizations

Integrating the Patient Perspective into the Development of Value Frameworks


This report resulted from Avalere and FasterCures’ workshop in 2015 that discussed the growing trend of creating value frameworks and...

Value and coverage Healthcare delivery Patient organizations

Expanding the Science of Patient Input: Pain Points and Potential


The FasterCures workshop highlighted both the growing pains associated with patient-centric research and the amazing potential.

Patient organizations

Expanding the Science of Patient Input: The Power of Language


Language matters. At a February 2016 workshop of leaders committed to expanding patient engagement hosted by FasterCures, just 22 percent felt...

Patient organizations Taxonomy

Parkinson's Advocates in Research

Parkinson's Disease Foundation

This program connects Parkinson's patients and their care partners with training and opportunities to serve as partners in research alongside...

Patient organizations Training

Unitio Community Application for Research and Engagement (CARE) platform


A proprietary real-world patient engagement platform designed to enable peer-to-peer support for people touched by disease while providing them with...

Patient organizations

PatientsLikeMe Health Data-Sharing Platform


PatientsLikeMe has developed a proprietary online network that includes more than 400,000 people living with more than 2500 conditions, sharing...

Patient organizations

PCORI Ambassadors Program


This program aims to help train volunteers to share PCORI's mission of "research done differently" through patient-centricity with the ambassador's community.

Patient organizations PCORI Training

Natural Histories Patient Registry Platform


This platform houses several natural history patient registries to help address the unique needs of researchers and stakeholders developing treatments...

Patient organizations

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

A short guide to successful patient involvement in EU-funded research

Innovative Medicines Initiative

A practical guide on how to involve patients across all stages of healthcare research aimed at people writing applications for...

Clinical trials 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

Dialogue / Advancing Meaningful Patient Engagement in Research, Development, and Review of Drugs

National Health Council and Genetic Alliance

This paper summarizes recommendations generated during a 2015 workshop   attended by stakeholders from across sectors, including government, patient organizations,...

Clinical trials Patient organizations Patient focused drug development Training

The Voice of the Patient

FDA Center for Drug Evaluation and Research

Voice of the Patient reports summarize the information and testimonies provided by patients and patient representatives at a series of...

Patient organizations

Patient Representative Program


Resources for individuals interested in applying to become Patient Representatives to the U.S.

Patient organizations

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

Patients as Critical Partners in Rare Disease Development

Everylife Foundation

This framework outlines opportunities to engage patients in the development and delivery of therapies for rare diseases. (September 2015)

Patient organizations Patient focused drug development

The A to Z of how medicines are developed

European Patients' Academy on Therapeutic Innovation

These patient education materials provide a broad scope of information on drug development from drug discovery to clinical trials to...

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

Working with Regulators: A Focus on CMS

Cancer Support Community

This toolkit provides information about the Centers for Medicare and Medicaid for patient advocacy organizations to build a working knowledge...

Value and coverage Patient organizations

Working with Regulators: A Focus on the FDA

Cancer Support Community

This toolkit provides information about the roles and responsibilities of the FDA, how to access FDA decision makers, and resources...

Patient organizations Patient focused drug development

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

Patient Engagement Mapping

Patient Focused Medicines Development

The PFMD mapping tool is a user-populated platform that categorizes and maps existing initiatives and frameworks to provide a snapshot...

Clinical trials Patient organizations Patient focused drug development

Building Smarter Patient Registries


This report ties together research from interviews, FasterCures’ survey data, background research and data gathered at events, including a “Disruptors’...

Patient organizations