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
FasterCures asked a multi-stakeholder group to discuss PRO-related challenges and opportunities across R&D, starting with the perspective of patients.
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...
From Aspiration to Application: 5 Years of Patient-Centricity
FasterCures
FasterCures has mapped nearly 100 multi-stakeholder initiatives producing frameworks, methods, toolkits, draft regulatory guidances, training programs, and case studies.
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...
Integrating the Patient Perspective into the Development of Value Frameworks
FasterCures
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
FasterCures
The FasterCures workshop highlighted both the growing pains associated with patient-centric research and the amazing potential.
Expanding the Science of Patient Input: The Power of Language
FasterCures
Language matters. At a February 2016 workshop of leaders committed to expanding patient engagement hosted by FasterCures, just 22 percent felt...
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...
Unitio Community Application for Research and Engagement (CARE) platform
Unitio
A proprietary real-world patient engagement platform designed to enable peer-to-peer support for people touched by disease while providing them with...
PatientsLikeMe Health Data-Sharing Platform
PatientsLikeMe
PatientsLikeMe has developed a proprietary online network that includes more than 400,000 people living with more than 2500 conditions, sharing...
PCORI Ambassadors Program
PCORI
This program aims to help train volunteers to share PCORI's mission of "research done differently" through patient-centricity with the ambassador's community.
Natural Histories Patient Registry Platform
NORD
This platform houses several natural history patient registries to help address the unique needs of researchers and stakeholders developing treatments...
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 Representative Program
FDA
Resources for individuals interested in applying to become Patient Representatives to the U.S.
TRAIN Central Station
FasterCures
TRAIN Central Station is the online platform for venture philanthropy in medical research, where foundations that fund research share best...
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)
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 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...
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...
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...
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
FasterCures
This report ties together research from interviews, FasterCures’ survey data, background research and data gathered at events, including a “Disruptors’...