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Creating an Essential Resource for People With Bleeding Disorders

About the Hemophilia Federation of America (HFA)

HFA is a non-profit organization that provides support to people with bleeding disorders. Since 1994, the Washington, D.C.-based organization has delivered patient education, services, and advocacy for a community of patients and caregivers across the United States.

HFA’s mission is to create a better quality of life for all people with bleeding disorders, including those with hemophilia, von Willebrand disease, other blood factor deficiencies, and platelet disorders. It aims to achieve this by:

  • Working in conjunction with other national and state organizations (as well as healthcare providers, insurers, patients, and caregivers), to advocate for safe, affordable, and accessible therapies and health coverage
  • Speaking regularly before Congress and advocating with other state and federal agencies
  • Providing education, tools, and resources to the community

From obtaining a diagnosis, to finding information about the condition, to financing treatment and looking over insurance options, people living with bleeding disorders encounter a wide range of obstacles that can be daunting to negotiate.

The Challenge

The relatively low prevalence of bleeding disorders means that though support does exist, it can be difficult for people in rural or lower-income areas to access resources in person. A ‘local’ event may be a six- to eight-hour cross-state drive. HFA helps to fill this gap by offering essential resources online.

New families are a key audience group for HFA. Although bleeding disorders are often genetic, many people don’t know that they are carriers, and spontaneous genetic mutations can also occur. When a child is diagnosed with a bleeding disorder, parents suddenly find themselves confronted with a deluge of new information—all of which can be difficult to process at the time of the diagnosis.

HFA approached LEO Learning for assistance in creating and delivering resources and courses to these new families. The solution would need to help families learn about bleeding disorders at their own pace. This meant material that was medically educational while retaining a warm and sympathetic approach—essentially bringing the feel of HFA’s face-to-face events into eLearning form.

HFA also had a longer-term desire to extend similar materials to all people in the community and to cover topics beyond the basics. These topics would include emerging therapies, clinical trials and advice on non-medical topics such as employment rights, building a sustainable career, and managing finances while living with a bleeding disorder.

We chose LEO Learning because it offered the complete package. We had a vision for what our learning platform could be, but limited manpower to realize that. LEO provided access to talented and visually creative designers and proved that it could be trusted to do independent research to learn about our audience and our subject. With an outline and access to the right source material and experts, I always felt I could trust LEO to deliver the content our community needs and deserves.

– Lori Long, HFA Institute Director

The Solution

In 2017, HFA selected LEO to deliver its ‘new families’ eLearning content, and an ongoing partnership continues to produce a wide range of useful online courses for people with bleeding disorders. The LEO team implemented a dedicated Moodle LMS—HFA’s Learning Central (freely available via login at hfalearning.org)—to deliver eLearning courses to HFA’s specifications.

Key design goals for the course content included:

  • As far as possible, providing basic and scientific path treatments of all topics. The ‘Basic’ version provides high-level medical information to a layperson audience. It's written for a high school reading level and targeted at all patients, their families, and friends. The ‘Scientific’ version is for community members who want to learn the content more deeply. It’s written for an audience with a higher technical understanding.
  • Content of all levels was created by LEO designers with significant input from HFA subject matter experts. Expertise is drawn from a variety of backgrounds, including community members, social workers, doctors, nurses and physical therapists. Additionally, all information in courses is vetted by a medical professional.
  • Adult HFA community members provide testing and feedback from the very early stages of design.
  • All courses are authored in the Gomo Learning authoring tool, ensuring that the output is fully responsive and accessible on a full range of devices, including smartphones. Video content is typically around five minutes in length to further support mobile viewing during small periods of downtime.
Screenshot from eLearning content designed by LEO Learning for HFA

For key messages, LEO’s work included the production of high-end animations. Among these, an explanation of the clotting cascade—the blood coagulation process commonly disrupted by bleeding disorders—presents complex medical knowledge through easy-to-follow motion diagrams. Similar animations explain new and emerging therapies such as gene editing and antibody therapy, providing a look at microscopic processes that by their nature defy easy visualization.

Most importantly, the courses are delivered using a story-based approach. Community members are placed front and center of the content, introduced as guides to each topic, and deliver their lived experience and insights. HFA’s own photography is mixed in with carefully selected stock imagery to enhance course authenticity, all with the goal of enhancing a sense of fellowship.

LEO Learning’s approach to these courses has helped make a large volume of often quite technical information on bleeding disorders easier for people—who may be in a moment of crisis when they arrive—to assimilate. Beyond this, the message LEO helps us get across is quite simple: you’re not alone.

– Lori Long, HFA Institute Director

The Results

HFA Learning Central has 1,300 users, with on average two to five new people arriving every week potentially seeking information after a new diagnosis, or after learning about HFA’s work. Around 700 users have used the foundational ‘Bleeding Disorder Basics’ course specifically. Even veteran members have fed back that they have discovered new and useful information by taking the course, with one returning learner highlighting that they’d previously been taught “everything about bleeding [...] but nothing about clotting”. The second most popular course, ‘Research and Clinical Trials’, has reached 160 users.

HFA has a non-captive audience for the majority of its content, and courses are free to consume. Though focused primarily on affecting change in the learner, the team has recently added small quizzes, and tracks results on pre- and post-testing with a view to measuring and improving the experience. Feedback from several learners is that they have enjoyed taking more courses than they originally intended due to the short, easily-completed pieces of each course. One learner said, “I just kept doing one more bit, and before I knew it, I’d completed a few extra topics!”

Informal feedback on the courses is also overwhelmingly positive:

In reference to Bleeding Disorder Basics:

“What an outstanding project! The crispness, simplicity, and direct access to specific knowledge is one of a kind and new for our community. I wish I had this when my children were born. I do believe my son would be alive today if I had access to this information when my twins were diagnosed in 1998. This gives voice to the questions patients and caregivers may have but may be too afraid to ask or may be getting advice that doesn’t feel right. This is empowering.” – Woman with Bleeding Disorder

In reference to Joint Health:

“I thought this [Exercise Modifications] video was really good, and appropriate for all ages. This is something I'd like to have a copy of so I can watch the videos even after the training material is long gone.” – Gentleman with Hemophilia A

In reference to Current, New, and Emerging Therapies:

“Looking great, thank you. Very simple, and exact at the same time. Good job.” –Gene Editing Expert

In reference to Inhibitors:

“Good stuff. I think this is an area that a lot of people aren't educated in, me included. If you don't have an inhibitor you might wrongly think you'll never have one. Thanks for putting this together.” – Gentleman with Hemophilia A

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