PSA: From Very Rare to Very Real

Some rare blood disorders are a life-threatening emergency that require urgent action, but for some healthcare professionals (HCPs) it's hard to recognise and treat a disease you rarely see or experience. McCann Health New Jersey, an IPG Health company, helped develop, design, and support the launch of 'From Very Rare to Very Real,' a virtual reality (VR) experience to help HCPs look beyond data and diagnostic algorithms, and instead actually feel like they are at the centre of a real emergency. The goal of the experience is to change outcomes for a rare blood disorder, acquired thrombotic thrombocytopenic purpura (aTTP), that can claim 90% of lives if left untreated1 and disproportionately impacts Black communities and women.2,3 The experience aims to help HCPs gain more exposure to the disorder and the diagnosis journey a patient may go through. Leading haematologists in the field have noted rapid differentiation and recognition are crucial, but protocols and general awareness to help diagnose this rare disease are lacking. Consulting with key opinion leaders, patients, and diversity advocates, McCann Health New Jersey produced a nuanced and powerful story that was then brought to life in a 360-degree live-action video production. The user-driven actions and decision-making move the diagnosis and treatment story forward and in different directions, putting HCPs at the centre of this haematological emergency from three perspectives - the patient’s, the emergency room (ER) physician’s, and the haematologist. As the patient, you’re specifically immersed in the world of a Black woman seeking medical attention. You experience the sights and sounds of a medical emergency, and the frustration of the path that many patients encounter on their way to a rare disease diagnosis. As the ER physician, you search for clues to identify this rare, deadly disease. But you learn more than the clinical facts - the mother’s desperation and the patient’s apprehension. As the haematologist, you’re forced to pull it all together. To make diagnosis and treatment choices without the real, potentially deadly consequences. Throughout 2022, From Very Rare to Very Real will be rolled out to key haematologist audiences and conferences across the US, with larger plans to adapt it for web use so that more HCPs can access this important and potentially lifesaving content.