We’ve managed to get patients more integrated into many areas of medical research, but a final frontier is putting patients into the discussion on value. FasterCures has long been engaged in work that strives to bring the patient perspective to the medical R&D process and, in partnership with Avalere, is committed to developing the first value framework that truly includes patient perspectives and addresses individual patient value considerations.
Join FasterCures on Wednesday, June 1, from 4 to 5 p.m. Eastern for the definitive tutorial on existing tools and frameworks, an exploration of the critical need for patients’ perspectives on value to be addressed, and an update on how payers currently use frameworks in a value-based environment and where that landscape is headed.
- Marc Boutin, CEO, National Health Council
- Kate Goodrich, Director, Center for Clinical Standards and Quality, Centers for Medicare & Medicaid Services
- Josh Seidman, Senior Vice President, Avalere
- Margaret Anderson, Executive Director, FasterCures (moderator)
Help shape the discussion by submitting questions in advance when you register, sending an email to firstname.lastname@example.org or tweeting us using #FasterCures.
This free Webinar is part of FasterCures' Webinar series designed to spotlight innovative approaches to disease research.
Since day one, FasterCures’ work has been aimed at promoting effective models of collaboration to advance and accelerate biomedical research. Getting new medical products from discovery to patients requires all sectors—academia, industry, government, clinical care, nonprofits and philanthropy— to work together throughout the research and development process.
The relationship between nonprofit patient foundations and academic institutions has evolved in significant ways in recent years. While this evolution has the potential to create more productive partnerships, it has also created new challenges. Shifting priorities and a move toward more outcomes-driven philanthropy have prompted a reexamination of the traditional partnership model.
The role of patients has evolved dramatically, from recipient of care to active partner in defining and prioritizing research strategy. This heightened focus on patient-centricity has brought increased demand from scientists and sponsors for “research-ready” communities to accelerate patient-centered studies. While patient registries are often cited as the solution to overcoming research barriers, the platforms, objectives, and data collected through...
Since the Patient-Focused Drug Development (PFDD) initiative was launched in 2012, the Food and Drug Administration (FDA) has held or scheduled 14 disease-specific meetings to better understand patients’ experience with symptoms, impacts on daily living, and available therapies. With more meetings on the docket for 2015, and growing interest among patient groups in applying the PFDD model to developing their...
The Cystic Fibrosis Foundation’s recent return on investment in Kalydeco has placed a magnifying glass on the venture philanthropy model and its business-minded approach to funding for-profit biotech and pharma companies. Driven by the urgency to find treatments and cures for their own diseases, these patient-powered foundations are often the players with the greatest incentive to make strategic, early-stage investments...
The legislative and regulatory calendars for 2015 are already filling up with opportunities to impact the biomedical research and development landscape in the United States – from 21st Century Cures to PDUFA VI negotiations to the impact of the omnibus on appropriations. In this Webinar, experts in federal budgetary, legislative, and regulatory matters talked about what to expect from Washington,...
How does a society, inundated with a great number of incurable diseases, ensure that those who would dedicate their time to finding cures have the resources necessary to do so? Declines in investment for innovative medical research and early-stage biotech companies have spurred patients and their supporters to be more engaged than ever in raising both funds and awareness for...
Would you take a drug that could kill you? Understanding benefit-risk assessment in pharmaceutical products
“Would you take a drug that could kill you? We ask questions like this all the time,” noted Bennett Levitan of Janssen Research & Development during a July 29 FasterCures Webinar about understanding the benefit-risk assessment in new pharmaceutical products. “Do I let the wind blow through my hair or do I wear a helmet for safety? Do I text...
We all know that that our clinical trials system is not working as it is. A strong body of evidence suggests that the one test, one drug model is inefficient and expensive; and that a very low percentage of patients are even being made aware of, let alone participating in, clinical trials.
Getting new medical products from discovery to patients requires all sectors—academia, industry, government, clinical care, nonprofits, and philanthropy— to work together throughout the research and development process. But collaboration is a complex endeavor, and integrating the right partners is far from easy.The concept of collaboration is not new to biomedical research and it comes in all forms. Researchers are continuously...
The healthcare system in the United States is ever-evolving and complex. There are tremendous pressures now to reduce the nearly $3 trillion we spend on healthcare each year without compromising the quality of care and outcomes for patients. The notion of value (that is, receiving high quality care at lower costs) is fundamental to reforming the healthcare system away from...
“The way biomedical research is carried out is changing fundamentally,” Sage Bionetworks President Stephen Friend declared at the beginning of a webinar about the crowdsourced computational challenges Sage is facilitating in partnership with the DREAM (Dialogue for Reverse Engineering Assessment and Methods) project that originated at IBM.
Evaluating the balance between the benefits and risks of new products under review is among the most important elements regulators juggle across the lifecycle of a product. And the question of how to bring more structure, rigor, consistency, and predictability to benefit-risk evaluation is receiving intense focus at the moment.
"This platform could change the way research is done in the future … We all need to work together to make this a success,” concluded COPD Foundation Founder and President John Walsh near the end of FasterCures’ Jan. 29 Webinar about the new $100 million PCORnet (National Patient-Centered Clinical Research Network) initiative of the Patient-Centered Outcomes Research Institute (PCORI).
FasterCures has long believed that philanthropy can be a significant force for progress in medical research, when applied strategically. In an extremely informative Webinar on June 19, participants heard about a terrific example of the strategic application of philanthropy at the Leukemia & Lymphoma Society (LLS) in its Therapy Acceleration Program (TAP).
Engaging patients in the research process is more complex and exciting now than ever before. Patient-driven organizations are moving beyond simply creating patient registries or serving as a conduit to participants for clinical trials and are marshaling their forces in new and more comprehensive ways. In a FasterCures Webinar on March 20, participants heard about two exciting new models of...
We've long heard how intellectual property (IP) can be a roadblock to innovation, but since it's a necessary and critical "cost" of doing business in drug development, we began to wonder if it might be possible to create an agreed-upon culture of responsibility in the practice of negotiating IP for medical research collaborations
Science Exchange and The Reproducibility Initiative: Improving the efficiency and impact of academic research
Hear about the Science Exchange's Reproducibility Initiative, which aims to reward high-quality, reproducible research and provide a mechanism for industry to identify robust new drug targets for the development of effective new therapies.
Mary Dwight of the Cystic Fibrosis Foundation (CFF) and Cynthia Rice of JDRF shared their views about why it’s important for groups like theirs to engage with regulators, as well as how to get started and how to be effective, during a recent FasterCures Webinar, “Engaging with FDA: A Guide for Foundation Funders of Research.”The panelists recommended that foundations ask...
The Learning Collaborative, a partnership between the Leukemia & Lymphoma Society (LLS), University of Kansas Cancer Center, and the National Center for Advancing Translational Sciences (NCATS) at NIH, is attempting to break the traditional drug discovery and development paradigm by bringing together blood cancer, drug discovery, and development expertise across several organizations.
Three distinguished leaders discuss opportunities for accelerating research through improvements in biobanking, the use of electronic medical records, and the release of personal health information for research.
This Webinar features attorneys Ken Schaner and David Lubitz and Linda Johnson of JDRF on how to craft the most thoughtful, responsible approaches to intellectual property.