By Katharine Sedivy-Haley, PhD Candidate, Hancock Lab & Lily Takeuchi, Graduate Student, Kizhakkedathu Lab
The Bayer-UBC Bleeding Disorders Collaboratory, established in 2012 with a $750,000 financial commitment from Bayer Inc., has stimulated substantial innovation in the treatment of hemophilia and other bleeding disorders by integrating and supporting programs at the Centre for Blood Research at UBC, St. Paul’s Hospital, and BC Children’s Hospital. As a whole, the Collaboratory has increased communication between researchers, clinicians, and patients, and empowered patients to monitor and prevent bleeding.
With the support of the Collaboratory, the CBR has improved its capacity to share knowledge among multiple groups: between experienced researchers and trainees, basic and clinical researchers, and between researchers and the community. The Collaboratory supports graduate students and undergraduate summer students involved in blood research. It also provides funding for seminars, the CBR Research Day for undergraduate students, the Earl Davie Symposium, and the Norman Bethune Symposium. The Earl Davie Symposium is attended by basic scientists, clinicians, and patients, and in 2017 hosted talks on the topics of hemophilia, coagulation, thrombosis, inflammation, and sepsis. The internationally recognized Norman Bethune Symposium similarly brings together clinicians, students, scientists, and para-medical personnel.
Under Dr. John Wu’s direction, the comprehensive provincial pediatric bleeding disorders program at BC Children’s Hospital sets improvement-oriented goals with strong support for and communication with parents and adolescents. Collaboratory resources have allowed the pediatric program to examine patterns of bleeds so as to better prevent and manage them. As part of this process, point of care ultrasound is now used to detect bleeds and show young patients the internal effects of a bleed. Adolescents and young adults benefit from improved patient transitions into adult care, which includes mindfulness training, a peer counsellor, and combined pediatric-adult clinic visits, to ensure continuity of care. Improved transition to the adult program may be particularly helpful for patients with mild hemophilia, who may not need regular visits to the adult clinic but would still benefit from support in managing their bleeding and social issues. The Collaboratory has also funded a one year fellowship to address a gap in training for physicians specializing in hematology.
In the first three years of the Collaboratory, the provincial adult bleeding disorders program at Saint Paul’s Hospital, directed by Dr. Shannon Jackson, achieved an 85% decrease in bleeds in patients with severe hemophilia A. Not only does preventing bleeds improve patient health in the short-term, but it also avoids or delays complications, such as joint arthritis, which can have a serious long-term impact on quality of life. The program attributes this success to an increased capacity for individualized care, with a focus on patient autonomy. With this strategy in mind, the program is developing new mobile and digital technologies to help monitor patient bleeds, deliver immediate feedback on overall joint health, and provide rapid access to health information. These technologies will enhance patient participation in managing their bleeding disorders: a perfect example of personalized medicine at work!
Ms. Sarah Mink, Business Relations Manager at Bayer, says, “Bayer is unique in that they really show a commitment to the hemophilia community, and this partnership is reflective of a desire to collaborate and innovate patient care outcomes… Bayer is really hoping to offer support at all levels for the hemophilia community.” Thanks to this support, the Bayer-UBC Bleeding Disorders Collaboratory is indeed a leader in the innovation of patient care strategies, and a model for similar collaborations worldwide. The CBR is fortunate to have such a wonderful partner in Bayer!