Maysa Ghammachi's role as patient executive officer at Genpharm is a newly evolved role and very much a first for the region. Maysa provides valuable support to patient organisations and through awareness campaigns and events, works hard to break down barriers and tackle the taboos surrounding rare disease in the region
PEO series: meeting the beating hearts behind the rare brands
How new is the patient engagement role in your organisation, how has it evolved and what are your hopes for the role in the future?
The role of patient engagement isn’t only fairly new at Genpharm but it is the first patient advocacy role within a pharma company in the region. However, with one of our core values being “We always put patients first”, patient engagement has always been at the centre of our day-to-day actions. As the organisation has grown with time so has our resources and networking. This has given us the possibility to tackle more projects and collaborations. With the trend of digital healthcare expanding, I can envision Genpharm joining that movement. Our future project to tackle: How can the digital health tech space be used for patient advocacy?
What does a typical week entail for you, and are there any specific projects you can tell us about?
With the rare disease patient associations in the region being in their infancy, part of my role entails providing support and resources. I get in touch with our partners abroad, such as in the US and Europe, and use our networking to bring tools to them. We had the opportunity in the past to collaborate with Treat NMD. We collaborated by bringing to the region and translating their neuromuscular diseases material into Arabic. Recently diagnosed families were given the resources once diagnosis was made by their physicians. Another big aspect is to use our current social platforms and create campaigns to raise awareness of rare diseases.
What were your personal motivations to taking up a role in patient engagement?
Coming from a digital creative background, I was taught that design is not only about aesthetics, but it is about function and purpose. From there the idea of purpose evolved and led me unconsciously towards the role I hold today. My position allows me to use my creativity but with a bigger purpose. I know that with each awareness campaign, project or event we are one step closer to changing someone’s life. That is my purpose.
What makes the role of patient engagement officer important to your organisation?
Globally, there is often a predisposed prejudice attached to pharmaceutical organisations. I believe that a PEO’s role is to break this. Patients and biotech companies are closely intertwined; one needs the other. We need to take into consideration patient needs to be able to provide correct support and treatments. When we look at our region in the MENA, rare diseases are still considered taboo in many corners of our society. Part of having the role of PEO at Genpharm is to break down these barriers and obstacles. By raising awareness and educating, we are able to open the conversation.
In your role, how do you ensure the patient voice remains central?
A simple thing that can be overlooked is the importance of listening. I feel taking the time to listen to families and their stories plays a big role in keeping patient centricity. The more you take time to understand what the family has gone through, where they currently are and what changes they need, the more likely you are able to give the support needed. From there, we are able to identify the correct platforms to give them a voice as well as guide them to support centres. An example is our recent collaboration with a Rare Revolution Magazine and MENA Spotlight Edition which includes interviews with families as well as the patient associations.
How do you reconcile operational business needs with elevating the patient voice?
By raising rare disease awareness and supporting our community, we aim to facilitate the knowledge and diagnosis pathway of rare disease patients and their families. It undoubtably is a wholesome alliance.
What are the most rewarding aspects of your role?
The most rewarding aspect of my role is knowing that however big the part I played, someone’s life was changed for the better. The feeling is indescribable especially once you are able to see the results and direct impact of your actions.
What is your proudest moment in your career thus far?
My proudest moment so far in my career is being able to be a part of this journey. I am proud to be able to work in an organisation who makes promises of change and delivers them. An example is a SMA educational initiative that Genpharm launched. Its purpose was to visit local schools and educate teachers on the early signs of SMA.
What advice would you give someone considering working in the rare disease space?
My advice is to not think twice. Join and join now the rare disease journey. It is a long one but with committed efforts we can shorten it together.
If you weren’t Patient Engagement Officer of Genpharm, what was Plan B? What did your 10-year-old self want to do as a job?
It is a hard question to answer as I believe my role as a PEO has been an ongoing and evolving journey. From my early beginnings, we had internally identified a need for the patients to have a dedicated voice. Filling that gap has been a natural transition but nevertheless almost predetermined. Growing up, I always was interested in being a doctor or a lawyer. I feel by being the patient executive officer at Genpharm, I have a middle ground between both. I closely work with the health sector and by being an advocate, I am able to lend a voice to support those who need it the most.