Kathy Giusti, Founder and Executive Chairman of the Multiple Myeloma Research Foundation, To Address U.S. Senate Committee in Favor of Increased Access to Patient Health Data to Advance Scientific Research
Norwalk, Conn., September 15, 2015 – On Wednesday, September 16 at 10:00 AM ET, Kathy Giusti, Founder and Executive Chairman of the Multiple Myeloma Research Foundation (MMRF) will deliver remarks on the need for widespread access to patient data in order to further scientific research to the U.S. Senate Committee on Health, Education, Labor and Pensions (HELP).
The hearing “Achieving the Promise of Health Information Technology: Improving Care Through Patient Access to Their Records,” builds on the series intended to address issues with the federal government’s six-year-old, $30 billion program meant to encourage adoption of electronic health records (EHRs) at doctors’ offices and hospitals.
“I’m truly honored to participate in this hearing and to raise awareness of the value of electronic health records based on the lessons I’ve learned as a patient and leader of a non-profit organization committed to driving positive clinical results for patients,” said Kathy Giusti, who founded the MMRF in 1998 following her diagnosis with multiple myeloma, a rare blood cancer. “We understand firsthand the major role data and technology will play in advancing research and improving patient outcomes. If we are able to harness the two and increase the aggregation of electronic health records, patients will be able to better manage their health and the research community will have vast information to advance science.”
Giusti’s remarks will underscore the value of EHRs and the need for technology to better support patients, integrate data and advance cures using multiple myeloma, an uncommon and fatal disease, as an example. The MMRF has worked alongside academia, government, industry, and technology partners building a databank to help identify important targets and speed drug development.
The U.S. Senate HELP Committee is led by Chairman Lamar Alexander (R-Tenn.) and Ranking Member Patty Murray (D-Wash.). During Wednesday’s hearing, Committee members Susan Collins (R-Maine) and Elizabeth Warren (D-Mass.) will serve as acting Chairman and acting Ranking Member respectively. Giusti will be joined by witnesses Raj Ratwani, PhD, Scientific Director, National Center for Human Factors in Healthcare, MedStar Health, Assistant Professor of Emergency Medicine, Georgetown University School of Medicine and Eric Dishman, Intel Fellow, General Manager For Health And Life Sciences, Intel Corporation.
A live video of the hearing will be available on Wednesday, September 16 at 10:00 AM ET here: http://www.help.senate.gov/hearings/achieving-the-promise-of-health-information-technology-improving-care-through-patient-access-to-their-records.
For more information on the Multiple Myeloma Research Foundation, visit https://www.themmrf.org/.
About Kathy Giusti, Founder and Executive Chairman, Multiple Myeloma Research Foundation (MMRF) and Multiple Myeloma Research Consortium (MMRC)
Kathy Giusti, a multiple myeloma patient, is the Founder and Executive Chairman of the Multiple Myeloma Research Foundation (MMRF) and the Multiple Myeloma Research Consortium (MMRC). She has more than two decades of experience in the pharmaceutical industry, previously holding senior positions at G.D. Searle and Merck. Since founding the MMRF in 1998, Giusti has led the Foundation to establish innovative, collaborative models in tissue banking, genomics, and clinical trials. The MMRF’s unique end-to-end system in precision medicine is accelerating new treatments for patients. Today, Giusti is widely recognized as a champion of open-access data sharing and a strong advocate for patient engagement, not only in their cancer care, but as part of the research and drug development process. Giusti currently serves on the White House Precision Medicine Initiative Working Group and the Harvard Business School Health Advisory Board. She has previously served on the President’s Council of Advisors on Science and Technology (PCAST), the National Cancer Advisory Board (NCAB), and the National Cancer Policy Board (NCPB). Giusti’s leadership has earned her several prestigious awards and recognitions. Most recently, she was ranked #19 on Fortune Magazine’s Worlds’ 50 Greatest Leaders. In 2011, she was named to the TIME 100 List of the world’s most influential people. Giusti has been featured on the Today Show, NBC Nightly News, CBS Evening News, Fox News, CNN, and Bloomberg. Her efforts have also been profiled by The Wall Street Journal, The New Yorker, Harvard Business Review, The New York Times, Forbes, WIRED, and Fast Company. Giusti graduated magna cum laude from the University of Vermont College with a Bachelor of Science degree in Biological Sciences and holds an MBA in general management from Harvard Business School.
About the Multiple Myeloma Research Foundation (MMRF)
The Multiple Myeloma Research Foundation (MMRF) was established in 1998 as a 501(c) (3) non-profit organization by twin sisters Karen Andrews and Kathy Giusti, soon after Kathy’s diagnosis with multiple myeloma. The mission of the MMRF is to relentlessly pursue innovative means that accelerate the development of next-generation multiple myeloma treatments to extend the lives of patients and lead to a cure. As the world’s number-one private funder of multiple myeloma research, the MMRF has raised more than $300 million since its inception and directs nearly 90% of total budget to research and related programming. As a result, the MMRF has been awarded Charity Navigator’s coveted four-star rating for 11 consecutive years, the highest designation for outstanding fiscal responsibility and exceptional efficiency.
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