BOSTON, November 2, 2015 – Unitio, Inc., a Boston based nonprofit organization and The Leukemia & Lymphoma Society (LLS) today announced a partnership to develop an online patient community that will bring together those affected by blood cancers to share real world experiences and contribute to vital research. This partnership marks the first endeavor in cancer for Unitio, a-first-of-its-kind nonprofit designed to unite patients, caregivers, researchers, clinicians and industry across an array of diseases to advance care and improve patient outcomes.
Seeking to leverage the power and reach of digital technology to collect actionable patient data and insights, LLS selected Unitio’s proprietary Community and Research Engagement (CARE) platform to develop its online patient and caregiver community. CARE offers a secure, turnkey approach to enable communities to connect, share and participate in research. The new LLS digital patient and caregiver community will be modeled after Unitio’s flagship T1D Exchange community, Glu, created for people touched by type 1 diabetes. LLS’s online community will closely mirror Glu, which since 2009 has grown to include approximately 14,500 diverse, active participants who, together, help speed promising research by asking questions, sharing knowledge and offering support.
The LLS online community will connect patients with one another and with the research process by accelerating access to valuable information and resources and empowering patients to provide information about their unmet needs, shedding light on potential new paths for better care and treatments. Content will support and engage patients, caregivers, and supporters via articles and blogs, group discussions, polling, and other timely news on blood cancer. In November, LLS will begin beta-testing the community website with a select group of LLS members. The full site will launch in early 2016.
“Medicine is evolving rapidly and greater patient engagement across research, advocacy, policy and clinical care is central to improving outcomes and finding new therapies,” says Dr. Larry Saltzman, executive research director at LLS. “We are excited to partner with Unitio and about the potential of the CARE platform to gather information from a large pool of people touched by blood cancers. Understanding their challenges and perspectives about living with and managing these diseases daily will advance and accelerate research.”
Funding for the LLS community has been provided by LLS board member Bernard H. Garil and his wife, Ethel, in memory of their son, Michael, who at age seven was diagnosed with acute lymphoblastic leukemia (ALL) and by the Michael Garil Leukemia Research Fund at the Dana-Farber Cancer Institute. After years of chemotherapy and cancer recurrences, Michael underwent a lifesaving bone marrow transplant that cured his disease. However, chemotherapy caused serious side effects that ultimately led to his passing at age 39. Throughout his cancer journey, Michael shared his experiences in an effort to increase awareness of potential long-term effects of treatment among patients and their families. “Ethel and I are extremely gratified and pleased to see our dream of a patient-focused community come to life,” says Mr. Garil. “It has been our hope and the focus of our work through LLS to help create a world without blood cancers. This new platform will provide invaluable data to create new and better treatments which will lead to longer lives for patients.”
This novel partnership helps further Unitio’s mission to transform health, care and costs for everyone affected by chronic and acute medical needs by uniting patients with research. LLS’s online community will be among the first real-world patient-engagement platforms, designed to fast-track issues that are important to blood cancer patients and their families.
“We are so grateful to Bernie and Ethel for their relentless dedication and commitment to LLS and our mission,” said Dr. Louis J. DeGennaro, LLS’s President & CEO. “LLS is the voice for all blood cancer patients and through this new community, we will be giving patients and even greater voice about their care. The information emanating from this engaged patient population will aid LLS in our work to fund research and to find cures for patients with blood cancers.”
An estimated 1.2 million Americans are living with, or are in remission from a blood cancer. This year more than 160,000 people will be diagnosed, accounting for nearly 10% of all new cancer cases in 2015. Approximately every 10 minutes, someone in the US dies from a blood cancer.
“There is an urgent need for new and better therapies that improve outcomes and quality of life, and Unitio offers a model for 21st century healthcare,” says Dana Ball, CEO of Unitio and co-founder and executive director of T1D Exchange. “The traditional research paradigm has built-in limitations and processes that constrain scientific progress. The Unitio model breaks down these barriers to drive discovery and speed the delivery of new treatments.”
The online community platform is a key piece of the puzzle, allowing patients and families to play a direct role in increasing the pace of therapeutic advances, adds Ball, a national thought leader on “patient-centricity.” Ball will share insights on the “trend toward patient-centeredness” at the upcoming Partnering for Cures conference, the annual meeting of the Milken Institute’s FasterCures, taking place in New York City November 1st-3rd. As the leader in the blood cancer arena, LLS’s DeGennaro will participate in the Milken Institute event, as well, moderating a panel on venture philanthropy and participating in another on the future of R&D partnerships.
This initial partnership with LLS serves as an example of Unitio’s varied offerings. Other services include community building and management, licensing, and creating processes for integrated research alliances.
“Unitio is uniquely positioned to partner with different types of groups – from advocacy and nonprofit organizations to corporate and government entities – to create new paths for medical and research development,” says George Serbedzija, vice president of Strategic and Corporate Development. “In the near future, we hope to support work in a number of diseases. LLS is an ideal first partner and Unitio is honored to work with this renowned organization to help patients share resources and experiences while moving the research needle.”