Integrating Rare Disease Patients into Pre-Clinical Therapy Development; Finding our Way with Patient Input

BioPontis Alliance for Rare Diseases

This white paper reports on a 2016 workshop held to define methods and practices to enable integration of patients into...


Patient focused drug development

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

Principles for Making Health Care Measurement Patient-Centered

American Institutes for Research

Five principles for patient-centered measurement were developed with input from a multidisciplinary group of stakeholders.


Patient-reported outcomes

Harnessing Evidence and Experience to Change Culture: A Guiding Framework for Patient and Family Engaged Care

National Academy of Medicine

The National Academy of Medicine's Leadership Consortium convened a Scientific Advisory Panel to create this discussion paper on care delivered...


Healthcare delivery

Emerging Guidelines for Patient Engagement in Research

International Society For Pharmacoeconomics and Outcomes Research (ISPOR)

Researchers describe strengths, challenges, and impact of partnering with patients to conceptualize, design, and conduct outcomes research, drawing on three...

The PCORI Engagement Rubric: Promising Practices for Partnering in Research

PCORI

The Rubric provides a framework for operationalizing engagement to incorporate patients and other stakeholders in all phases of research.


Comparative effectiveness research

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

Patient Engagement Rubric & Evaluation Framework

PCORI

The Evaluation Framework attempts to capture questions about PCORI's goals and the methods used to achieve those goals, as well...


PCORI

Compensation Framework for Engaged Research Partners

PCORI

This framework provides financial compensation guidelines for research proposals submitted to PCORI, as well as guidance for general planning of...


Comparative effectiveness research PCORI

Patient Engagement Rubric

PCORI

This document summarizes PCORI's model for patient-centered outcomes research, including funding requirements, methods for involving diverse groups of stakeholders in...


Comparative effectiveness research PCORI

Guiding Practices for Patient-Centered Value Assessments

National Pharmaceutical Council

A set of guiding practices for patient-centered value assessments of medical products composed of 28 elements in six key elements:...


Value and coverage

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

From Anecdote to Actionable: The Case for Patient Perspective Data

FasterCures

A model for advancing the collection and application of patient perspective data, including initial ideas for how such data might...

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

Visual Model of Patient Engagement in Benefit-Risk Assessment through the Medical Product Life Cycle

DIA

This visual model was created by participants at a DIA conference depicts how patients across the full spectrum of biomedical...


Patient focused drug development

Recommendations: Patient Engagement Across the Research & Development Continuum

Clinical Trials Transformation Initiative (CTTI)

A comprehensive set of recommendations to guide development of collaborative relationships between sponsors of biomedical research and development and patient organizations.


Patient focused drug development

Paths to Patient and Public Involvement for Medical Research Charities

Association of Medical Research Charities

This report provides guidance to medical research charities interested in adding patient-centric methods to their organization's activities. (October 2009)


Discovery research

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

Principles of Community Engagement - 2nd Edition

Department of Health and Human Services (HHS)

Developed as part of the work of the Clinical and Translational Science Awards (CTSA) Consortium's Community Engagement Key Function Committee,...

Lifecycle Approach to FDA's Structured Benefit-Risk Assessment

BIO

This white paper identifies considerations for biopharmaceutical companies using FDA's Structured Benefit-Risk Assessment Framework throughout a product's lifecycle, including steps...


Benefit-risk assessment

Roadmap Guides Patient and Family Engagement in Healthcare

American Institutes for Research

The roadmap highlights opportunities to improve the healthcare system by creating partnerships with patients and families to advance these efforts...


Healthcare delivery

Patient and Family Engagement: A Framework for Understanding the Elements and Developing Interventions and Policies

Health Affairs

Author Kristin Carman discuss how patient engagement can occur across the health care system, from the direct care setting to incorporating patient...