The FasterCures Track September/October 2014: Accelerating 21st century cures

 

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“Twenty-first century trains running on nineteenth century tracks.”

That is how FasterCures Founder and Chairman Michael Milken aptly described the U.S. medical research process during a recent roundtable convened by the U.S. House of Representatives’ Energy and Commerce Committee. The Committee launched the 21st Century Cures initiative this year to identify solutions that can accelerate the pace of cures. Its work could revolutionize the biomedical research system.

Led by Chairman Fred Upton and Representative Diana DeGette, the initiative examines the full arc of the medical research process – from discovery to development to delivery – to determine how we can leverage federal investment in science and technology, maintain global leadership and competitiveness in medical innovation, and provide patients with effective and accessible medical solutions.

These topics are vital to our work, so FasterCures has been actively engaged in this initiative from the beginning – from serving as an ongoing resource on the topic to submitting comments. I spoke at the initiative’s first roundtable in June to share our policy recommendations on this topic, such as putting patients at the center of the discovery, development, and delivery process and incentivizing collaboration across sectors.

Five themes have emerged from testimony and public submissions thus far:

  • Encourage and incentivize public-private partnerships that accelerate medical research.
  • Encourage new models for clinical trials that take advantage of today’s science.
  • Leverage data collected to advance medical knowledge and improve patient care.
  • Find the right incentives for encouraging the most innovative research.
  • Provide a steady, predictable trajectory of support for medical research.

We look forward to welcoming Chairman Upton and Representative DeGette to our upcoming Partnering for Cures conference to continue the discussion about how we can improve those 19th-century tracks so that 21st century cures can get to patients who need them.

Regards,

MargaretMargaret Anderson
Executive Director
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Program Highlights

FasterCures has a number of programs focused on bringing efficiency to the medical research process by identifying and eliminating the roadblocks that slow medical research down. Read below for the latest updates on several of our programs.

Partnering for Cures

bringing together leaders from across all sectors of the medical research enterprise for the express purpose of fostering collaboration

3 things that will make P4C your most productive 3 days of the year

P4C video 2014Don't miss out on Partnering for Cures, Nov. 16-18 in New York! Register today so that you can:

  • View 30 of the most creative, cross-sector collaborations in medical research highlighted as Innovator Presentations
  • Be awed by 4 transformative technologies that will speed up R&D featured in the new Entrepreneurs for Cures session
  • Leave P4C with scores of new contacts and probably partners -- from official networking events and scheduled meetings to informal brainstorms in the lounge with some of the most innovative minds in medical R&D

Benefit-Risk

expanding opportunities for patient perspectives to shape product development and influence regulatory decisions

FDA officials joined FasterCures’ Benefit-Risk Bootcamp

photo from FasterCures' Benefit-Risk BootcampPatient advocates, policymakers, research and engagement staff of patient organizations, and other stakeholders explored how to help build capacity for expanded participation in the new benefit-risk landscape during FasterCures’ Benefit-Risk Bootcamp on Sept. 23 in Washington. Topic experts, including the U.S. Food and Drug Administration's (FDA) Janet Woodcock and Jeff Shuren, Patient-Centered Outcomes Research Initiative's Joseph Selby, and Parent Project Muscular Dystrophy's Holly Peay discussed novel opportunities that are emerging for patient perspectives to shape decision-making in R&D, clinical care, and coverage.

McCleary moderates session on patient-centered benefit-risk assessment

RARE Patient Advocacy Summit logoAt the RARE Patient Advocacy Summit, presented by Global Genes Sept. 11-12 in Huntington Beach, Calif., K. Kimberly McCleary, FasterCures’ director of strategic initiatives, moderated a session on the FDA’s Patient-Focused Drug Development Initiative and what it means for rare disease advocates. McCleary spoke about how patient organizations are mobilizing their communities to help inform decisions made by the FDA and industry sponsors so that treatments move more swiftly from the lab to the patients who need them.

Philanthropy Advisory Service

building a high-impact medical philanthropy portfolio

How do you measure your return on philanthropy?

Philanthropy Advisory Service logoFasterCures’ Philanthropy Advisory Service (PAS) is designed to help philanthropists understand the state of research for specific diseases and to assist in making smarter investments to accelerate the development of innovative treatments. The program offers a range of services that empower philanthropists with the actionable information they need to make impactful philanthropic investment in research, including:

  • private medical R&D education sessions,
  • disease landscape reports,
  • evaluation of investment opportunities, and
  • assembly of world-renowned scientific advisors.

Policy

addressing policies that keep us from propelling forward

Young scientists, partnerships, and resources among the focus of final 21st Century Cures Initiative roundtable

photo from 21st Century Cures Roundtable

Chairman Upton (left) and Rep. DeGette convened the roundtable, which featured Milken

Investing in the next generation of scientists, incentivizing partnerships, exploring new approaches to clinical trials, and ensuring stable funding for research were among issues top of mind for nearly two dozen members of Congress at an Energy and Commerce Committee roundtable last month. Led by Chairman Fred Upton and Representative Diana DeGette, the roundtable caps a four-month effort to gather solutions designed to accelerate the path to cures, the focus of the Committee’s 21st Century Cures Initiative. The roundtable featured top health leaders, including Health and Human Services Secretary Sylvia Burwell, National Institutes of Health (NIH) Director Francis Collins, FDA Commissioner Margaret Hamburg, and FasterCures Founder and Chairman Michael Milken.

Value and Coverage

fostering a reimbursement environment that incentivizes innovation and ensures life-saving therapies are accessible to patients

Tools foster understanding of value and coverage issues

The briefs explore questions such as "How is quality measured in healthcare?"Understanding payer strategies and defining how patient perspectives can shape productive discussions about value are critical to our efforts to foster a reimbursement environment that incentivizes lifesaving biomedical innovations. Check out a series of six issue briefs commissioned by FasterCures that provide fundamental overviews of important aspects of the current healthcare system. The briefs examine:

  • Health Plan Coverage Policies and Approaches,
  • Alternative Payment Models,
  • Evidence-based Performance Measurement,
  • Provider Networks,
  • Regulatory Developments on Health Plan Coverage and Reimbursement, and
  • Creating a Research Framework to Engage Patients..

Consortia-pedia

advancing the understanding of the breadth and scope of approaches that bring together non-traditional partners with a shared R&D goal

Consortia-pedia effort builds momentum, spotlighted as part of ‘Disruptive Thinkers’ session

Consortia-pedia logoMark Lim spoke at the “4th annual Dpharm: Disruptive Innovations to Advance Clinical Trials” event in Boston, Sept. 11-12. Lim was interviewed as part of the “Disruptive Thinkers” session, where he highlighted the Consortia-pedia project. The goal of the project is to better understand the breadth and scope of approaches that a wide range of consortia have adopted to bring together non-traditional partners with a shared R&D goal. Lim addressed challenges that some consortia face as well as opportunities to further collaboration. Lim also discussed exploring the path and benefits of the shared transparency model on Oct. 2 in Cary, N.C., at the Clinical Trial Data Transparency Forum sponsored by SAS Institute, Inc. The event featured insights from industry and academic thought leaders on key components and next steps toward furthering clinical trial data transparency and sharing initiatives.

Keep posted for our upcoming database of consortia -- a tool that will allow groups to identify and collaborate with existing research consortia. More to come at consortiapedia.fastercures.org

Innovator Spotlight: Aled Edwards on leveraging collaboration to realize the promise of genomics

Aled Edwards quoteCheck out our Innovator Spotlight on Aled Edwards of Structural Genomics Consortium (SGC). He discusses how SGC makes tools available to the research community around the globe with no strings attached. This latest profile is part of a series on innovative individuals who lead some of the most creative consortia in medical research.

Learn more about FasterCures Programs  |  Upcoming and past speaking engagements

Tools You Can Use

View TRAIN Webinar archive to learn about impact of crowdfunding on medical research

Greg Simon quote from TRAIN WebinarWith today's patients and their supporters more engaged than ever in raising both funds and awareness for promising science, crowdfunding has become an increasingly popular vehicle among bioscience entrepreneurs and philanthropists. View an archive of last month’s Webinar, where an expert panel discussed some of the most interesting crowdfunding models and outcomes, and addressed the potential for impact on a larger scale. This free Webinar is part of FasterCures' TRAIN (The Research Acceleration and Innovation Network) Webinar series designed to spotlight innovative approaches to disease research.

 
Until next issue
If you have questions or would like more information about any of the items above, please contact info@fastercures.org.
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