At the end of 2019, we published an article about the paucity of publications in rare diseases. But rather than stop there, we decided to do something about it. We combined our expertise in building immersive digital experiences, desire to communicate more effectively in rare, and our publications prowess, to develop rareJourney.
How does rareJourney help fill the publication gaps? By providing patients and caregivers a digital platform for documenting their disease experience over time, rareJourney yields a rich data set that can be aggregated and analyzed, creating new understanding of areas ranging from the challenge of obtaining a diagnosis to the psychosocial impacts of rare disease.
For the patient and caregiver, rareJourney eases the burden of note-taking and provides the sense of satisfaction and fulfillment that can emerge from a regular journaling practice. For those who may find the idea of documenting disease experiences intimidating, the rareJourney framework helps the patient or caregiver learn what is important to document. The interface also makes documenting easy to incorporate into daily life.
Because patient privacy is at the core of our company values, data in rareJourney is stored securely. But it is also easily shareable with others who may benefit from it — including healthcare providers who may benefit from the improved understanding of their patient’s experience.
Over time, these individual entries by rareJourney users begin to coalesce into a unique longitudinal picture of a rare disease experience. These data can be mined for insights and published in peer-reviewed articles or gray channels (eg, social media or white papers).
To learn more about how rareJourney creates opportunity to close some of the gaping holes in the rare disease medical literature database through its unique approach to data generation and publication, we encourage you to download our product overview and contact us soon.