Meeting the partners — The Synergist
They say it takes a village, and the rare diseases community is just that - a tight knit group with a sense of camaraderie and fellowship.
This is the power of Share4Rare - creating a platform where the villagers - the rare disease patients, caregivers, reserarchers and clinicians - can find much-needed support, while contributing data to the research efforts taking place in the field.
Yet a collaborative approach was necessary in creating and promoting this project. That’s why The Synergist decided to contribute its specific expertise in bringing disparate stakeholders with a common goal together. Together with the consortium we have championed co-creation in a number of separate projects and this has been the cornerstone of the approach thus far.
It all started with a co-creation process throughout 2018, supporting the platform design start with an extensive desk research of behavioural studies, scientific publications and empiric conclusions, articulating a clear description of the very different people affected by rare diseases - patients and caregivers in different diagnostic stages, as well as patient advocates, clinicians and researchers in the field. By exploring and analysing their current behaviour, possible needs, and ways to address them, we have helped to develop a rich repository of data that will serve as the basis for all future co-creation activities.
The analytical work was then put into practice through 3 co-creation workshops to support the platform development. The focus of the first workshop was a deeper “needs analysis”, as we sought to gain a better insight into the lives of affected people - from the impact a rare disease diagnosis can have on one's life, to how they use internet services and digital platforms. Complementing this was the second workshop focused on an extensive and interactive feedback session on a first version of platform design and interaction model used in the platform. These two workshops then informed the third and final workshop, focused on the unique values of the Share4Rare platform, as well as more specific needs that patients and caregivers have.
Share4Rare functions as a global platform to facilitate the collation of clinical information to foster research that matters to patients with rare conditions.
Together with the other partners, contributed to the development of a layered platform version of the platform - educating patients and caregivers with publicly accessible information, a secure community for the patients and caregivers, and a research section with the purpose of collecting patient information for analysis, which was the core and final value of the platform.
Since the platform was launched in 2019, The Synergist has sought to continuously support the consortium effort to improve and update it.
With a collaborative approach at the centre of the project, we worked as a consortium to attract, engage and retain users, ensuring that Share4Rare reaches as wide an audience as possible.
A long-term engagement plan framework that covers all steps a user takes from the first interaction with the platform, to the point where the user is ready to step up and advocate for solutions was at the heart of the partnership activities.
This type of sustainable engagement can only be achieved by a truly patient-centric project, co-designed from its inception. This co-creation effort has been achieved by taking advantage of the co-designing workshops, as well as webinars and many others online engagement tactics, including online polls, surveys, social media inquiries, stories etc. Active listening was and will continue to be the key to ongoing learning and solution development in the rare disease community.
Ultimately, the goal is to facilitate and enable the growth of the platform user into a loyal and active member of the community, and enjoy the symbiotic relationship that results. Various tactics have been proposed to ensure that users follow a smooth path between the discovery of the service and the true commitment stage; including strong community management practices ensured by the patient organisation partners, advancing qualitative content in early stages provided by patient experts, clinician experts and more, effective communication techniques on social media, promoting thought leaders of the community (from the project consortium and beyond), user-oriented design of the features and technologies developed by our IT partner, retargeting through direct marketing, platform gamification, and more.
As medicine becomes increasingly tailored to the individual patient, this is nowhere more evident than in the field of rare diseases, where sometimes just a handful of patients with a particular condition may exist. Collective engagement is critical in this instance as the latest data on new therapeutics, research projects and diagnostic tools can be shared almost instantly. The Synergist is proud to have contributed to a collaborative approach in rare diseases.