Increasing Shared Decision-Making and Education on Emerging Hemophilia Therapies
The King County Medical Society’s hemophilia education initiative—funded by Pfizer and the National Bleeding Disorders Foundation (NBDF)—was developed to empower healthcare professionals and individuals living with hemophilia. By promoting shared decision-making (SDM) and improving access to emerging therapy information, the project aims to strengthen care across disciplines.
This initiative focuses on translating complex therapeutic advancements into practical, accessible tools that support clinicians in real-world settings while helping patients better understand their treatment options.
Survey-Driven Education: Grounded in Real-World Insight
To guide content development, KCMS conducted a baseline survey of healthcare professionals across specialties. These findings directly shaped the tone, format, and delivery of all educational resources.
Clinical Guidelines & Additional Resources
This initiative aligns with leading clinical guidance across the hemophilia community. The resources below provide clinicians with deeper insight into treatment strategies, dosing considerations, and evolving standards of care.
World Federation of Hemophilia (WFH) Guidelines
The WFH Guidelines provide comprehensive, globally recognized standards for the diagnosis and management of hemophilia, including treatment protocols, prophylaxis strategies, and multidisciplinary care considerations.
View WFH GuidelinesMASAC Recommendations (National Bleeding Disorders Foundation)
MASAC recommendations provide detailed guidance on treatment algorithms, dosing strategies, and clinical decision-making across hemophilia care.
For questions, contact info@bleeding.org.
Hemophilia A
The primary treatment for hemophilia A is factor VIII (FVIII) replacement therapy, delivered by infusion. Most patients use recombinant FVIII made with DNA technology, which is safer than plasma-derived products. MASAC recommends recombinant therapies due to their lower risk of blood-borne infections.
For individuals with severe hemophilia A, prophylaxis—regular infusions to prevent bleeding—is considered the optimal standard of care.
Newer non-factor therapies, such as emicizumab, offer preventive treatment via subcutaneous injection and are approved for patients with or without FVIII inhibitors, including pediatric populations.
Additional Medications
DDAVP (desmopressin)
Used in mild hemophilia A for selected bleeding situations or pre-procedural management. Available as an injection.
Note: The nasal spray formulation (Stimate) is currently unavailable in the United States.
Aminocaproic acid
An oral antifibrinolytic used to stabilize clots, particularly in dental procedures and mucosal bleeding. MASAC recommends use in conjunction with clotting factor therapy.
Hemophilia B
Hemophilia B is treated with factor IX (FIX), typically recombinant and produced using DNA technology. These products are preferred over plasma-derived options due to improved safety.
Therapy is administered intravenously or via central access devices. For patients with severe disease, MASAC recommends prophylaxis to prevent bleeding episodes and long-term complications.
Aminocaproic acid may be used as an adjunct therapy to stabilize clots, particularly in dental and mucosal bleeding. MASAC advises administering factor first, followed by antifibrinolytic therapy.
Project Completion & Ongoing Impact
This initiative represents the full scope of our planned work. With the release of the video series and downloadable tools, KCMS has delivered on its commitment to support shared decision-making and expand awareness of emerging hemophilia therapies.
These resources are designed to remain useful beyond the life of the project, continuing to inform clinical practice and support patients, families, and care teams navigating an evolving treatment landscape.
Overview
Advancing hemophilia care through education and shared decision-making
Strategy
- Conducted baseline and follow-up needs assessment surveys
- Produced 20 short-form educational videos hosted on YouTube and KCMsociety.org
- Developed a downloadable shared decision-making toolkit for clinical use
- Distributed newsletters biweekly to more than 7,000 healthcare professionals over four months with project information
- Ran a social media campaign with three or more focused posts each week
- Launched a dedicated hemophilia education webpage on KCMsociety.org
Reach & Engagement
- 7,000+ clinicians reached through repeated newsletter dissemination
- YouTube videos viewed nearly 500 times
- More than 500 social media engagements
King County Medical Society
Why Partner with KCMS
Early Recognition and Access in Psoriasis & Psoriatic Arthritis
King County Medical Society (KCMS) is one of the largest and most active county medical societies in the country, with a long-standing role at the center of clinical practice, public health, and physician leadership.
KCMS does not operate at the margins of healthcare. It operates within it, directly engaging physicians and healthcare professionals where clinical decisions are made and where change is most likely to occur.
This position allows KCMS to translate education into action through practical tools physicians can use in real time, within real workflows, to improve diagnosis, referral, and access to care.
KCMS reaches more than 7,000 physicians and healthcare professionals across both primary care and specialty settings. This breadth is critical. Early recognition gaps often begin in primary care, where patients first present and where diagnostic pathways are established.
By reaching clinicians at this point of care, KCMS is able to influence how disease is recognized and managed from the beginning.
This work is strengthened by an extensive collaboration network. KCMS partners with dozens of organizations at the local, state, and national level, including the American Medical Association, specialty societies such as rheumatology, state and county medical societies, health systems, public health agencies, and community organizations.
Unlike traditional education or advocacy organizations, KCMS is embedded within the clinical community. Its work is developed with physicians and implemented within real care settings, resulting in stronger engagement and a higher likelihood of adoption in practice.
Proven Impact Across Major Initiatives
KCMS’s approach has been tested and refined across multiple large-scale initiatives, consistently demonstrating improvements in clinician confidence, behavior, and care delivery.
Hemophilia Initiative
Pfizer + National Bleeding Disorders Foundation
KCMS developed short educational videos and shared decision-making tools designed to support patient-centered care, grounded in real-world clinical gaps.
Cervical Cancer Initiative
Pfizer-funded | Year-long program
KCMS addressed both clinical complexity and administrative barriers, particularly prior authorization delays, through a comprehensive toolkit and video-based education.
What KCMS built:
- Prior Authorization Toolkit
- 21 short-form, on-demand videos
- Clinical education modules and decision tools
- Open-access KCMS resource hub
Childhood Lead Poisoning Initiative (2019–2023)
Public Health – Seattle & King County + Community Partners
This multi-year initiative demonstrates KCMS’s ability to operate at the intersection of clinical care, community engagement, and policy.
Scope and activities:
- Free lead testing across schools, clinics, and community sites
- Multilingual outreach in English, Spanish, Somali, and Vietnamese
- Accredited CME program with University of Washington
- Youth engagement and statewide presentations
- AAP-aligned quality improvement modules
Reach, Engagement, and Sustained Exposure
KCMS combines scale with consistency, ensuring that initiatives are not only widely distributed but repeatedly encountered over time.
Why This Model Works
Clinical Access
Direct connection to physicians at the point of decision-making.
Practical Implementation
Tools designed for real workflows and immediate use in practice.
Sustained Dissemination
Repeated exposure that supports lasting behavior change over time.
Return on Investment
- Reach clinicians directly at scale
- Engage them repeatedly over time
- Equip them with tools that influence real clinical decisions
- Extend impact through sharing across systems and organizations
- Continue generating value beyond the grant period
The Opportunity: Psoriasis & Psoriatic Arthritis
Psoriatic disease often presents in ways that are easy to overlook. Patients may present with joint pain, stiffness, or non-specific skin changes that are attributed to more common conditions and treated in isolation.
As a result, underlying disease is not recognized early, and patients may go months or years before reaching the appropriate specialist. By the time they are diagnosed, disease progression has often occurred.
Our Approach
KCMS begins by asking physicians and healthcare professionals directly what is getting in the way of early recognition.
A baseline survey identifies where awareness is low, where confidence drops off, and where delays occur. That input drives everything that follows, ensuring that all materials reflect real clinical challenges rather than assumptions.
What We Build
- Short, practical videos for quick updates
- Simple reference tools to support diagnosis and referral
- Shared decision-making resources
- Access tools, including prior authorization support
Bottom Line
KCMS is not simply a dissemination partner. It is a platform for clinical implementation and system-level impact. Investment in KCMS supports the development of resources that are adopted in practice, shared across organizations, and sustained over time.