In 1993, the son of Chris and Florence Hendriksz, future founders of FYMCA, was diagnosed with a rare disease. Because there was no information available about the disease in South Africa where the family lived, they had to leave their home and friends and move to the UK in search of treatment.
Today, Chris is the world’s leading ultra-rare disease expert. His family company, FYMCA, is helping to educate doctors and healthcare providers in low-income countries on how to diagnose rare diseases, and how to treat and manage the patients.
With iSpring, FYMCA is training doctors across the globe, delivering unique knowledge via the learning management system iSpring Learn. As Chris told us:
“Many of these doctors have never ever been to a medical conference, because they can’t afford it. With iSpring, we’re taking the message out to them and making it accessible to them — they can even learn offline.”
Educating doctors across the globe: the Panama event
Each FYMCA program is based on a live conference that takes place in one of the low-income regions of the world. Using the material covered at the event, FYMCA is creating an online program whose members can access it for one year.
In 2017, FYMCA Medical arranged their first event in Panama. They invited 30 doctors from the Central American region: Panama, Nicaragua, Ecuador, the Dominican Republic, and Mexico. At the event, they presented a board of experts from around the world who gave lectures about three rare diseases: Gaucher Disease, Fabry Disease and MPS Disorders (Mucopolysaccharidosis). These lectures were captured on video.
Creating an online learning program with iSpring
After the event, Chris used these presentations and videos to create online learning courses with iSpring Suite:
“I took PowerPoint presentations, put all the video recordings in manually and synchronized them in the Narration Editor. Sometimes, if there are problems with sound, I use the iSpring tools to improve it or make minor changes.”
Chris also created a quiz for each presentation. In total, he single-handedly built all 30 courses and 30 quizzes without any IT background.
Once the courses were ready, the FYMCA team created a learning path in iSpring Learn and invited the 30 delegates who had attended the event. The Panama learning path consists of three modules — one per disease — and there are about 10 courses (45 minutes each).
Here’s what the program looks like from the inside:
“A big advantage of iSpring is that once the course is loaded to the system, it runs on any platform or mobile device. Delegates can even download courses, and that means a lot, because the Internet is often poor in these low-income countries”.
Right now, all 30 doctors registered on the platform are actively studying, but there are two who are running through the modules much quicker. One doctor has completed all 30 modules within a month.
“It’s very important for us to be able to monitor engagement with the content, because we are trying to identify the new leaders of the future who are really dedicated to this field of medicine, and train them up with adequate knowledge. That’s why the reports were actually one of the key reasons why we chose iSpring Learn.
I can actually make sure that doctors viewed all of the content — not just the quiz and run through, but also how many hours they physically spent looking at the content. The platform allows us to track that.”
The program continues: the Botswana event
Currently all FYMCA programs are supported by Shire, a biopharmaceutical company focused on serving people with rare diseases and other highly specialized conditions.
“Shire has a Charitable Access Program which provides contributions of medicinal products for rare, genetic diseases to non-governmental organizations in select countries. In addition to ensuring stable and continuous access to treatment for patients in underserved communities, the goal of this program is to also support capability-building for sustainable, long-term patient care. To make progress toward these goals, Shire is privileged to work with collaborative partners like FYMCA.”
Thanks to Shire’s support, in June 2018 another FYMCA event took place in Botswana. This time it was attended by 37 delegates and two patient organizations from South Africa, Botswana, Sudan, Ethiopia, Kenya, Tanzania, Mozambique, Mauritius, Lesotho, Zambia, Malawi, Nigeria, Cameroon, and Ghana. The training faculty included eight rare disease experts from the United Kingdom, the United States, Brazil, and South Africa.
In addition to three lysosomal disorders that were covered during the Panama event, this program also included disorders that FYMCA predicted to be occurring among local populations, like urea-cycle disorders, fatty-acid-oxidation defects, and many others.
Florence Hendriksz, Head of Operations at FYMCA Medical, shared some details of the Botswana event:
“For this event we did not require interpreters, all training was provided in English and delegates are comfortable in doing the online training in English. The delegates at this event were much more engaging either because of culture, or language, or the combination of the two.
Awareness of Rare Diseases across the African content is very poor, which is why this was such a significant event. For some Botswana delegates it was the first official / formal training in Rare Diseases.”
Preparing the second learning program with iSpring
Right now the FYMCA team are working hard to get the online training platform ready to launch the content. As the project has grown, Chris’s son Armé has joined the team. He shared his first experience of using iSpring:
A feature that was useful was that I could trim the videos and edit the sound within iSpring; it saved me from having to load another program just to make small adjustments.”
Armé also walked us through his process of content creation:
Once back from an event, I’ll have maybe four SD cards filled with footage. I will grab the footage from the cards (normally two to three hours of footage on an SD Card) and then cut them up into smaller videos (around 45 minutes) surrounding each topic.
Once I have all the videos for each topic, I will then head to PowerPoint where I have the iSpring plug-in. I will then spend my time in the Manage Narration window syncing up the slides with the video.
In order to quickly get through each 45-minute video, I use the thumbnails of the imported video to gauge when a slide has changed alongside the soundwaves to see any quiet areas that may represent a speaker going quiet whilst they change slides.
The combination of the latter only helps to get a rough idea and so I will then play the video at occasions and see how close the sync was. With this technique, I normally can get a video done within 30-45 minutes depending on the speaker and how well I can gauge their speaking style.”
Program results and impact
The program is already bringing results, and not just in the LMS, but in the real world too. As Chris told us:
“Since our event in Panama, we’ve actually had two children in Ecuador diagnosed. One of these patients was too far in this disease process, so actually giving him treatment will make his life hell. We were able to help the doctor to tell the family that even in our part of the world we won’t treat the child, but rather they should spend as much time as possible with the child, do some nice things and make some hospice arrangements, because sadly the child will not live for many more years. But it makes life at least manageable rather than not knowing.”
Dr. Zoya Panahloo from Shire also highlighted the importance of the FYMCA program:
The work that FYMCA does to provide rare disease education and services to physicians in developing countries is key.
By sharing this knowledge and making resources available to physicians for later reference, FYMCA’s educational modules help to strengthen the capabilities of physicians globally to improve diagnosis and, consequently, a more sustainable future outlook for patients with rare diseases.”
The future of the program
The next FYMCA event is scheduled for October in Kazakhstan. After the event, a new learning path will be launched in iSpring Learn. Chris shared some ideas for the future program:
One of the other plans of FYMCA is to start a paid program for doctors from companies in developed countries. The money made from this can be reinvested in the developing world again. Chris is very excited about the future of FYMCA:
“This program is my dream. I’ve actually left my full-time job now so I can do only this. I think the doctors and the children across the world deserve this and nobody else is willing to spend the time to develop it and we’ve said we will be willing to do that.”
At iSpring we are very proud to be part of such a project. You can learn more about the program on the FYMCA website. If you liked the story of FYMCA, support this article by sharing it on social media.