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Engaging Patients in Research and Health

Practice of Patient Engagement

Overview

Ensuring that patients remain at the center of the biomedical research ecosystem is a top priority for FasterCures. Our patient engagement work examines the current state of integrating patient perspectives and input in health care and medical product development. We also explore approaches and opportunities to meaningfully engagement patients in biomedical R&D activities and provide insights, considerations, and resources that can help advance the current patient engagement practices across the ecosystem.

Resources

Overview of Opportunities for Patient Organizations to Engage CMS

The Centers for Medicare and Medicaid Services (CMS) sets the standards for payers and value assessors nationwide. In this FasterCures Vital Voices workshop, learn about CMS’s structure, traditional and new mandates that are most relevant to therapeutic access, existing resources for patients, and hear success stories for patient organizations' engagement with CMS.

View the Vital Voices Workshop

Strategies for Patient Organizations to Inform CMS Access and Coverage Decisions

Patient organizations have the power to shape decisions by leveraging the collective experiences, data, insights, and perspectives of their communities to inform research and development activities and access to medical products. The FasterCures Vital Voices three-part webinar series dives into critical strategies— building effective coalitions, collecting patient experience data, and navigating state-level policy—offering real-world insights and actionable strategies for patient organizations to elevate the patient voice in CMS activities and decisions.

View the Vital Voices Webinar

Approaches for Medtech Companies to Incorporate Patient Engagement Strategies

Patient engagement has been slower to evolve in the medtech space compared to the pharmaceutical sector, but more device, diagnostic, and digital health companies are beginning to meaningfully engage patients in R&D activities. To explore the opportunities for patient engagement along the total product lifecycle of medtech R&D, FasterCures’ hosted a virtual public convening delving into the value and return on investment of patient engagement in medical technology product development.

View the Webinar

Related Reports

Report
Patient Engagement in Care Delivery: Approaches by Health-Care Providers
16 Jan 2025
Patient engagement is a critical component at every stage of the health care ecosystem, from drug development to care delivery.
Read Report
Hadly Clark and Erin Cieslewski
16 Jan 2025
Report
Defining and Demonstrating the Value of Patient Engagement in Medtech Research and Product Development
17 Oct 2024
In 2022, FasterCures published a report titled The Current Landscape of the Science of Patient Input, which examined the progress of patient engagement (PE) in biomedical research and identified ways to overcome ongoing challenges. Building...
Read Report
AS
Raymond Puerini, Katie Forth, Kristin Schneeman, and Aneri Suthar
17 Oct 2024
Report
The Current Landscape of the Science of Patient Input
28 Nov 2022
In the last decade, FasterCures and many stakeholders across the biomedical research ecosystem have driven initiatives to ensure that patients’ perspectives and input are appropriately represented across the product-development continuum...
Read Report
HO
Raymond Puerini and Henrietta Awo Osei-Anto
28 Nov 2022

Report
Advancing Models of Patient Engagement: Patient Organizations as Research and Data Partners
19 Oct 2020
FasterCures, alongside other patient-focused advocacy organizations, has long worked with stakeholders such as product developers and regulators to define and implement the “how to” of patient engagement. This series, “Advancing Models of...
Read Report
VB
Kristin Schneeman and Valerie Barton
19 Oct 2020
Report
Patient-Focused Drug Development Meetings: Smart Practices from Community Leaders
3 Sep 2020
FasterCures, a center of the Milken Institute, designed this guide for patient advocacy organizations that are interested in hosting, or are currently planning, an externally led patient-focused drug development (PFDD) meeting. We have...
Read Report
Report
Patient-Centric Initiatives: Focusing for Impact
17 Sep 2020
The impact of patient engagement has been demonstrated by numerous case studies for specific diseases and products, as well as a model for the return on investment. There is now a growing call for expanding beyond single examples of patient...
Read Report
TC AD CG
Taylor Cusher, Anna DeGarmo, and Cynthia Grossman
17 Sep 2020

Report
Expanding the Science of Patient Input: Pain Points and Potential
3 Sep 2020
Patient engagement has been called the “blockbuster drug of the 21 st century.” Studies find that the more engaged and involved patients are with their health and health care, the better the outcomes. There is now growing interest in...
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Report
Expanding the Science of Patient Input: The Power of Language
6 Jun 2019
Language matters. At a February 2016 workshop of leaders committed to expanding patient engagement hosted by FasterCures, just 22 percent felt there was broad agreement on what the term “patient-centered” means or represents. The need to...
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Report
Patient-Perspective Value Framework (PPVF)
1 May 2017
Read Report

Related Event Sessions and Webinars

What's Trending in MedTech?

This panel will explore a range of emerging issues in medtech (medical device, diagnostics, and digital health).

Beyond Checkboxes: Elevating Diversity and Representativeness in Patient Engagement

The gold standard for obtaining patient input for biomedical research once was ensuring a representative sample of the population with the disease.

Putting Your Money Where Your Mouth Is: ROI in Patient Engagement

Many medical manufacturers perceive the value of incorporating patients’ experiences and outcomes in R&D processes as a way to align research efforts with patients’ needs.

Making the Business Case for Patient Engagement

This session will open with remarks by Kasey Altman, Founder, Kasey Altman Research Fund, followed by a panel discussion on Making the Case for Patient Engagement.

What's Next for Patient Engagement

This session will open with a Time=Lives Talk by Sandra Abrevaya and Brian Wallach, Co-Founders of I AM ALS, followed by a panel discussion on Policymaking as a Driver of Progress.

Recent efforts to engage US patients in biomedical research have been bolstered by policymakers and congressional action.