FasterCures Track: October 2017

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Patient-centricity and collaboration emerge as key themes at Partnering for Cures in Boston

The value of patient-centric efforts, the necessity of biomedical R&D collaborations, and the desire for more collaboration with patients were common threads of the discussions held at Partnering for Cures Boston on July 12. Panelists discussed topics ranging from the challenges of data sharing to the uncertainty of the regulatory landscape. Read summaries of the plenary sessions and watch videos of all sessions, including David Fajgenbaum’s personal story of working relentlessly to cure his own disease and Meg Tirell’s candid one-on-one interview with Robert Langer of MIT.

PROGRAM HIGHLIGHTS

FasterCures commends bipartisan support of FDA Reauthorization Act

FasterCures commends the U.S. Senate on its strong, bipartisan support of the U.S. Food and Drug Administration Reauthorization Act (FDARA) (H.R. 2430), which passed the Senate on Aug. 3, matching the U.S. House of Representatives’ passage on July 12, via voice vote. FasterCures has been an active participant in the stakeholder meetings for both the Prescription Drug User Fee Act (PDUFA) and the Medical Device User Fee Amendments (MDUFA) since the first public meetings took place in July 2015. Throughout the process, FasterCures advocated for inclusion of provisions designed to enhance and advance FDA’s efforts to deepen and expand engagement with the patient community. We were very pleased to see those priorities reflected in the commitment letters for both MDUFA and PDUFA. In addition, FDARA – and PDUFA in particular – will provide critical resources to help FDA address the persistent challenge of recruiting and maintaining a workforce of highly trained scientists, clinicians, statisticians, and engineers.

Patients Count program maps history of patient engagement landscape

The year 2012 was pivotal for patient engagement, beginning the transition from aspiration to application in the field. The advancements made that year through policy initiatives, collaborative efforts, and foundation-led programs opened the floodgates for the rush of activity that we are seeing in the patient-centricity movement today. FasterCures’ latest Patients Count publication highlights the work of key contributors and projects in the early stages of developing the science of patient input.

Make multi-party R&D efforts easier with collaboration report and toolkit

Collaboration is a critical component of biomedical R&D, and it is becoming increasingly necessary—and challenging—to bring an idea from discovery to an approved and reimbursed medical product or therapy that can help patients. FasterCures convened a workshop of foundations with experience leading multi-party collaborations to gather their insights on leading, maintaining, and growing effective collaborations. This workshop helped shape the selection of tools and resources highlighted in the “Cornerstones of Collaboration: Foundation-led Partnerships to Accelerate R&D” report and the “Foundations as Collaboration Conveners” toolkit.

FasterCures dives into survey results to help patients understand data

FasterCures was granted a Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington PCORI Engagement Award to develop an educational tool to help individuals better understand their health data. To kick off the Health Data Basics project, the team surveyed more the 700 patients and caregivers in addition to completing interviews with 15 key opinion leaders in the health data space. Participants in this process shared their views on trust in data sharing, ability to access the data they need, and more. Some findings that stand out from the survey results include:

63 percent of survey respondents could not track down who their health data had been shared with.
30 percent aren’t sure there are safeguards to protect health data from being misused.
Nearly half don’t know or don’t believe the care anyone gets is tracked.

Explore full survey results, key takeaways, and more at HealthDataBasics.org.

Next stop: San Francisco! Register for Partnering for Cures on Nov. 14

The second Partnering for Cures event of 2017 is coming to the west coast. Speakers from across sectors will join FasterCures in the nation’s tech hub to share ideas on how advancements in technology can shape and enhance the future of medical research and health care. Don’t miss this chance to participate in conversations around the power of philanthropy, the blossoming Health Citizenship movement, and the potential impact of machine learning in R&D. Register now for P4C San Francisco.

Tracking the implementation of 21st Century Cures: Six months later

FasterCures' 21st Century Cures Tracker provides insight on the impact of the 21st Century Cures Act. June 13 marked six months since the passage of this landmark legislation. We have been tracking the implementation of the 100+ sections in Division A, which include the key provisions relevant to biomedical research and innovation—and the hard work of implementation is truly just beginning. See highlights and milestones from the first six months of tracking this legislation. As implementation continues, stay up-to-date on the effects of the 21st Century Cures Act by using the regularly updated tracker to help measure impact, highlight progress, and identify areas where more resources may be needed.

Explore the expanded and enhanced Consortia-pedia Catalogue

FasterCures recently added 80 new profiles to the Consortia-pedia Catalogue. These consortia span a broad range of disease types, including rare diseases like neurofibromatosis and schwannomatosis. Catalogue users can filter searches by disease type, consortium status, and type of research, enabling you to find collaborations of all scopes and sizes with a few clicks of your mouse. The catalogue also offers new functionality that allows you to download individual consortium profiles as PDFs and export search results as Excel files, which will help you sort and analyze data efficiently. Explore the updated and enhanced Consortia-pedia Catalogue to improve your research or find existing collaborations in your field.

BUZZWORTHY

Easing the Pain of Partnerships: How Can We Make Cross-Sector Collaborations in R&D Worth the Effort? by Kristin Schneeman, Director, Programs

Young Entrepreneurs Who Are Rewriting the Biopharma Business Model by Caitlin Franz, Associate

Clinical Trials: Crying Out for Collaborative Innovation, by Brad Smith, Director, Policy

Harnessing Your Health Data: A Resources Guide, by Andrian McAdams, Intern

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