Share4Rare. A platform as strong as its users
Disease burden of undiagnosed patients from a holistic perspective
As you might already know, Share4Rare is a safe space where patients and carers can connect, share knowledge, and get involved in scientific research. It is a place where geographical, physical or language barriers do not matter. It is a place where we break down barriers, encourage collaboration, and offer mutual support.
Just like any other digital platform — in the healthcare environment or any other — Share4Rare is as strong as the sum of its users. There is power in numbers, and this is especially true in the rare disease field. If we take a step back and imagine a scenario where a mother from Bulgaria who cares for her child with an ultra-rare disease connects with a father in Brazil with a child with identical symptoms but still undiagnosed, we can begin to grasp the power of this platform.
Now imagine hundreds, thousands or even tens of thousands of similar connections. Mapping the information exchanged not only helps to alleviate the very common thought of “I’m alone in this”, but can generate powerful data to help diagnose diseases, showcase the need for specific research in certain rare disease areas, and even help researchers with initial data sets.
The Share4Rare unique “People Like Me” feature does exactly this — it allows patients and caregivers to share their experiences, symptoms, challenges and learnings in a manner that is confidential but that also generates common intelligence, opening the doors and giving hope especially to undiagnosed patients with similar profiles, but also to other affected people still thinking they are alone in this.
But there is always a catch. As amazing as this may sound, this algorithm only works properly when significant numbers are involved. The richer the data and the higher the number of patients and caregivers, the better the potential outcomes. That is why one of the main objectives of the Share4Rare consortium is attracting and engaging with as many patients and caregivers as possible. This effort is based on a well-known methodology — the rules of persuasion and captology of Dr. B.J. Foggs, a theoretical frame for the development of an overall framework — the “behaviour chain of online participation” (or a behaviour funnel). In simpler terms, we look at how any person interacts with a digital product (think email, social media or an online store) and we try to predict their behaviour at every step of the way: from the first time they hear about that product, to the moment they are interested enough to explore it and finally, to the point where they become active and engaged users.
In the case of Share4Rare, the successful implementation of this framework is crucial. Because without enough engaged and interested users, there is a danger of significantly reduced impact. This simply translates to fewer people benefiting from this collective intelligence, perpetuating a situation in which rare disease patients and caregivers feel powerless and isolated.
The main challenge right now is reaching every family and person affected by rare disease. The hard work does not stop there, however, as we aim to help every Share4Rare user have a smooth pathway from the discovery of the service to the true commitment stage — where they become advocates of this solution. Various tactics are utilized, and these include: strong community management practices, advancing qualitative content in early stages, using retargeting techniques on social media, promoting thought leaders of the community, user-oriented design of the features and technologies, retargeting through direct marketing and showcasing top contributors.
You can also contribute to this effort! Share information about this platform in your community, or contact us if you have ideas on how to make it better: info@share4rare.org. We are here for you!
