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Peer-to-Peer Collaboration Improves
Services to Women and Girls
Article Provided by Foundation for Women and Girls with Bleeding Disorders
In the fall of 2013, the
Foundation for Women and
Girls with Bleeding Disorders
was contacted by Oregon Health and Science University’s
Hemophilia/Thrombosis Treatment Center to assist them in
creating a designated young women’s clinic.
The OHSU center staff had been seeing an increasing number
of young women with heavy menstrual bleeding within their
regular hemophilia/thrombosis clinic, and they wanted a
designated clinic day for young women. The FWGBD board
and staff identified the Women and Girls with Bleeding
Disorders Learning Action Network as the mechanism for
assisting OHSU.
Collaboration is Key
That year FWGBD launched the WGBD LAN with the goal
of bringing together hematologists, OB/GYNs and other
reproductive medicine specialists in an integrated and
collaborative peer-to-peer exchange of ideas, problem
solving of common challenges, as well as discussion of current the essential elements for a Women’s and Girls’ (Young
and best practices in the areas of diagnosis, treatment and
management of women and girls with bleeding disorders.
This network would engage professionals established in
serving women and/or girls with blood disorders with those
who want to begin or to improve their center’s services for
women and girls.
On a cost-effective web platform, the WGBD LAN is an
exchange of key information and best practices in the care of
women and young women with blood disorders. WGBD LAN
participants are representatives of hemophilia/hemostasis
and thrombosis centers that have a clinic or services for
women/young women or which wish to start a designated
women’s or young women’s clinic.
The WGBD LAN started with seven clinician/members and
today the network has 160 clinician/members at 56 distinct
institutions within 27 States. It also has one member each in
Canada and the Netherlands.
For more information about patient resources for women and girls with blood disorders, visit HFA’s Blood Sisterhood
Program at www.hemophiliafed.org/bloodsisterhood.
Healthcare providers can learn more about research and treatment options for women and girls with blood disorders
at fwgbd.org.
Outcomes to Date
In addition to the education and best-practice exchange that
the LAN platform is achieving, two important outcomes have
taken place.
1. Designated WGBD Clinic
The first main outcome of the WGBD LAN has been the
establishment of a designated clinic for women/young
women. WGBD Clinics are identified by the components
implemented by the clinic, following the WGBD Clinic of
Excellence model, which is described below. Typically, these
clinics offer both hematology and adolescent reproductive
health or adult OB/GYN expertise in a single setting to
diagnose and treat bleeding disorders and the heavy
menstrual cycles that accompany them. Since 2013, 17 WGBD
Clinics have been created through members’ participation in
the WGBD LAN.
2. WGBD Clinic of Excellence Model
In 2014, members, along with the FWGBD board, identified
Women’s) Clinic of Excellence. The model highlights the
collaborative hematologic and obstetric/gynecologic care for
women and girls with bleeding disorders delivered through
the comprehensive care model – a model deemed optimal for
women as it has been demonstrated for men with hemophilia
and people with cystic fibrosis and other chronic diseases.
The model’s five essential components are:
1. C oordinated and Combined Clinical Care (between
hematology and OB/GYN, adolescent medicine services)
2. Collaborative Care Team (Multi, Interdisciplinary)
3. Assessment of Patient and Clinic Outcomes
4. O ngoing Education and Awareness (Internally, Other
Departments, Externally)
5. Collaborative Clinical, Translational, Laboratory Research
(effectively using the WGBD LAN for cross-institutional
collaboration) S
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