Affecting around 50,000 people in the UK, lupus is a long-term autoimmune health condition. This means the immune system attacks healthy parts of the body as it is unable to differentiate between healthy and foreign cells. Patients can present with a range of symptoms, like fatigue, joint pain and skin rashes. Many people wait a long time to be diagnosed, leaving them confused and frightened about what is happening to them.
This Lupus Awareness Month, we’re pleased to launch our new systemic lupus erythematosus (lupus) experience to support pharmaceutical and healthcare professionals increase their understanding of what it’s like to live with the condition.
You may already know that lupus is an autoimmune disease that has no cure and is more likely to affect women. But do you know how symptoms can affect people’s relationships or the impact lupus can have emotionally as well as physically?
Our immersive simulation is designed for anyone working within pharmaceuticals and healthcare. It will open your eyes to the huge impact living with this disease has on patients and their families.
Lupus is unpredictable and can progress differently for everyone, manifesting as a single symptom such as joint pain, or in combination with others such as fatigue, skin issues, and hair loss. The quicker it is treated, the better it can be managed, but its unpredictable nature makes it difficult to diagnose.
The journey to diagnosis is stressful, and not knowing when the condition may flare up or deteriorate can be frightening. Outside of the obvious impact on health, the condition can threaten a person’s ability to work, have relationships, maintain friendships and generally participate in the elements of life that make it interesting.
Building empathy in healthcare
Research shows that empathy plays a key role in how people understand and relate to each other. It builds trust between patients and healthcare professionals, improves patient recovery and clinical outcomes, and supports patients’ mental health. For pharmaceutical teams, having empathy will help them place patients firmly at the heart of their work, enabling more meaningful conversations with healthcare professionals, better patient and marketing materials, and more products designed specifically with patients in mind.
At its core, our lupus experience is designed to build empathy through an increased understanding of the impact of the condition. Our aim is to help drive a patient focused approach in everyone that participates and inspire them to work in a way that can help make a difference to people’s lives.
A Life in a Day: living with lupus
Our lupus experience lets participants walk in the shoes of people with the condition, giving them a greater understanding of the challenges they face.
It’s an immersive, challenging and emotionally-charged simulation that covers the full day, from morning to night. It authentically reflects the immense difficulties patients face while living with this condition: for 24 hours you will act, speak, think and feel like a patient, making choices that actual patients face on a daily basis, inevitably disrupting your normal routine.
Delivered through an interactive app via your smartphone, you will be set realistic challenges, such as simulating mobility exercises to relieve stiffness and joint pain to getting to the bathroom on time with stomach cramps.
Our experiences also include realistic role play developed from actual patient experience. This involves phone calls from professional actors who will ask you to make potentially life-changing decisions. We also send you a kit of items designed to simulate a range of physical symptoms that people with lupus live with.
Informed by patients
To develop our lupus experience, we spent a lot of time talking to people with lupus about their day-to-day experiences of living with the condition. We are constantly astounded by the challenges patients face and how they cope with them.
The patient videos we use as part of the experience have been collated from the conversations with people with lupus. The initial feedback from participants who have trialled the lupus experience is that hearing first-hand from people who have the condition is “powerful” and a “really special moment”.