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Disease-focused Patient Advocacy is Changing Medical Research
New Rochelle, NY, December 2, 2016—Patient-organized fundraising with the intent to sponsor scientific research around a specific disease or medical condition is raising more than money and awareness—it may actually affect the scope, pace, and direction of medical research. The article “Turning Patient Engagement into Scientific Disruption,” published in the peer-reviewed, open access journal Healthcare Transformation, from Mary Ann Liebert, Inc., publishers, describes three individuals who developed patient-centered advocacy groups that can serve as models for how to envision science as a networked community. The article is available open access on the Healthcare Transformation website.
Michael Hoad, Executive Editor of Healthcare Transformation presents the inspiring stories of “Emily's Entourage,” in which Emily Kramer-Golinkoff engages in her own battle with cystic fibrosis, but also fights for the development of drugs and targeted therapeutics aimed at the rare genetic mutations responsible for her disease and about a third of all genetic diseases. Nicole Johnson's “Bringing Science Home” sponsors research focused on living and coping with a chronic illness such as type 1 diabetes. Mark Laabs relies on strategic crowd sourcing to raise funds for the “Rare Cancer Research Foundation” he established, which aims to break down barriers in research and encourage cooperation and collaboration.
“The patient revolution is taking hold, even in how science is performed,” says Healthcare Transformation Editor-in-Chief Stephen Klasko, MD, MBA, President, Thomas Jefferson University and CEO, Jefferson Health (Philadelphia, PA). “It turns out, patients have a great deal to teach us. They can disrupt our delivery systems and they are disrupting the barriers to targeted science.”
About the Journal
Healthcare Transformation, a breakthrough new peer-reviewed, open access journalzine spearheaded by Stephen Klasko, MD, MBA, President, Thomas Jefferson University and CEO, Jefferson Health (Philadelphia, PA), delivers the foremost research in re-imagining healthcare delivery, education, technology, innovation, and discovery. This world-class publication serves as a forum to present visions of the future, debate current models, and provide an invaluable source of optimism for everyone involved in healthcare and the transformation of healthcare. Presented through notable research articles, perspectives, commentaries, Letters to the Editor, interviews, and point/counterpoint debates, the journalzine pushes the boundaries of existing thinking to transform the future of healthcare frameworks, networks, and officialdoms. All journal content is available open access on the Healthcare Transformation website.
About the Publisher
Mary Ann Liebert, Inc., publishers is a privately held, fully integrated media company known for establishing authoritative medical and biomedical peer-reviewed journals, including Population Health Management; Telemedicine and eHealth; Cyberpsychology, Behavior, and Social Networking; Big Data; and Games for Health Journal. Its biotechnology trade magazine, GEN (Genetic Engineering & Biotechnology News), was the first in its field and is today the industry's most widely read publication worldwide. A complete list of the firm's more than 80 journals, newsmagazines, and books is available on the Mary Ann Liebert, Inc., publishers website.