When we caught up with Kristina Haley, D.O. of Oregon Health & Science University (OHSU) in Portland, she was fresh out of the 2018 Foundation for Women and Girls with Blood Disorders (FWGBD) Women and Girls with Bleeding Disorders (WGBD) Learning Action Network (LAN) meeting in Dallas. “Lots of new faces,” she happily remarked of the network’s tripled size since the previous year.
Building a Medical Network for Leveraging Collective Knowledge
Dr. Haley has been with the LAN since its inception in 2013 when OHSU decided to expand its treatment offerings to serve an increasing population of female adolescents with non-malignant bleeding disorders. She treats patients who grow up, go to remote schools, move away and become women; but who might continue to need specialized care after they leave Portland.
How can doctors like Haley find this care to make appropriate, beneficial referrals? Where are the clinics that combine women’s health and hematology treatments, and how do you know their doctors are familiar with the precise medical care that’s needed? This is the challenge many clinicians face: “It’s helpful to know where expertise lies,” Haley says. “I found FWGBD through Google search. The Foundation became a resource for my team, and we’ve worked together with a focus on how to develop clinics of excellence.”
A need to collaborate, share knowledge and build networks of medical expertise is the rationale behind the LAN. “We spend a lot of time trying to diagnose and intervene, but these patients are suffering while we figure things out. Our community of doctors understands what that’s like.”
Meeting with her LAN partners in person is critical to Haley’s overall process of developing a knowledge pool: “We’re all trained to go into a patient room and have an intense interaction with a patient,” Haley explains. “Our attention is easily divided otherwise. Meetings are vital to helping doctors connect, apply our focus, and help one another to ultimately help patients.”
Creating an Interdisciplinary Clinic for Girls with Bleeding Disorders
Haley began her OHSU clinic work with help from two in-house colleagues, hematologists Dr. Michael Recht, the director of The Hemophilia Center and Dr. Jody Kujovich, whose clinical focus is on adult women with blood disorders. She quickly realized two glaring necessities: she needed advice on how to treat children and adolescents in particular, and she also needed to spread awareness across the state of Oregon. “Our team was already sophisticated in its approach to women’s health,” Haley says, adding that kids need pediatric- and adolescent-specific treatment.
To find out how to help kids, Haley took to Google. There was no LAN then; there were no “clinics of excellence,” and there was certainly no directory for services explicitly devoted to the care of females with blood disorders, including sickle cell disease, in the United States. Haley had to make a lot of phone calls and knock on a lot of doors to serve her patient population.
One such door belonged to Drs. Sarah O’Brien and Fareeda Haamid of Nationwide Children’s Hospital in Columbus, Ohio. Haley connected with them in order to research how they had built their young women’s bleeding disorder clinic. Because her clinic is housed in a women’s health facility, Haley is able to leverage the knowledge of doctors and specialists who treat women across their myriad conditions; women, with their sex-specific hormones and distinct medical needs. She combines this knowledge with the hematology she practices and voila!: “Spots, Dots and Clots” - a unique and whimsically-named clinic for Portland-area girls with bleeding disorders, ages 12 to 18 - is up and running. Portland obstetrician-gynecologist Dr. Maureen Baldwin is Haley’s on-site partner in crime.
At Spots, Dots and Clots, Haley and Baldwin see patients on two Thursdays as well as one Friday each month. They provide a multi-disciplinary approach with patients being examined and treated by both a hematologist and an OB/GYN. Girls with bleeding disorders are able find treatment for bleeding and clotting and also benefit from combined wisdom when it comes to heavy menstrual bleeding, choosing contraceptives and explaining their challenges to family and friends.
Spreading Knowledge to Localized Providers
With such an established and successful group of women’s health colleagues working locally - and an extended set of LAN teachers to learn from across the country, Haley is identifying ways to make specialized care easier to access for Oregon patients. “We’re building our education as we need it,” she explains. “We’re experts because we’re in it, doing it. You gain expertise in that way.
“I provide educational conferences for local pediatricians, family medicine doctors and OB/GYNs,” Haley says about her hands-on work with providers. “They start an intervention and can make a referral to us if they need us; but we need to keep patients in their local communities because the drive to Portland from other areas of the state can be as much as eight hours. So many of our patients are missing school because of painful or heavy periods. Having them drive to Portland impedes our goal of helping them stay in school. We also focus on getting their iron levels up to help them go to school and succeed.”
Forging Ahead with a Focus on Research and Mentoring
It’s no wonder Haley’s LAN peers call her “Dora, the Explorer” – a nickname she merrily perpetuates. Haley travels light, a backpack in tow. She has a seemingly bottomless pool of energy and curiosity; and, like her cartoon archetype, she is continually searching for answers.
At the 2018 LAN meeting, she presented her latest research plans, appropriately named ATHENA, like the Greek goddess of wisdom. It’s a cross-sectional observational study of women and girls with bleeding disorders enrolled in the American Thrombosis and Hemostasis Network (ATHN) dataset. More specifically, she and her colleagues Drs. Robert Sidonio and Shirley Abraham will work to characterize reproductive tract bleeding and treatment strategies for heavy menstrual bleeding. Funded by her DREAM (Dataset Research Engagement and ATHN Mentorship) Award from ATHN, this is the kind of work that requires broad field and geographic participation. In short, Dora will continue exploring!
Dr. Kristina Haley and her colleagues understand that their own clinical practice can only reach so far. They rely on education and networking to serve their patients. As the LAN and directory continue to grow, so too does access to clinics of excellence for the under-served population of women and girls with blood disorders, living in the U.S. and beyond.