Author Harper Lee once wrote, “You never really understand a person until you consider things from his point of view.” But considering what it may be like to walk in someone else’s shoes and actually walking in them are two very different notions.
The rare disease community is made up of millions of unique individuals, each with their own experience, perspective, and journey. For many people affected by a rare disease, their journey living with the disease can be arduous. For instance, The Journal of Rare Disorders reports that on average it takes a rare disease patient 4.8 years and 7.3 specialists to receive an accurate diagnosis. Patients are often accompanied on their journey by loved ones, caregivers, healthcare professionals and other advocates, all of whom bring their own perspectives to bear.
While it may not be possible to actually walk in the shoes of each of these individuals, Alexion has developed a deeply immersive, industry-leading simulation highlighting the “moments that matter” and the unmet needs along the disease journey. Known as LEAP (an acronym for Learn, Evolve, Activate and deliver for Patients), this experiential learning program engages participants in the patient journey, through the lens of various stakeholders, to challenge assumptions, deepen understanding of the journey and identify and prioritize value-added solutions.
“To cultivate a culture of curiosity and empathy that truly understands patient experiences, it is imperative we gain actual firsthand experience,” said Rana Strellis, Alexion’s head of global culture and corporate social responsibility. “This is especially important in our field as we work each day to find solutions for the millions of members of the rare disease community who regularly encounter the unknown and uncommon.”
LEAP sessions are formulated around specific disease states and also focus on skills like active and empathetic listening and storytelling to maximize interactions with stakeholders.
Here’s how it works.
A stakeholder ecosystem is designed that is reflective of real-world situations. Participants learn about a disease through the voices of a patient, their family, their physicians, and other stakeholders. They are presented with scenarios along the patient’s journey allowing them to provide real-time reactions and identify solutions that can impact the outcome.
Some examples of “moments that matter” along the patient journey that are explored include the onset of symptoms, path to diagnosis, receiving treatment, continuing access and care, and living with the disease after diagnosis.
From there, the group engages in either a role-play session centering on multiple types of interactions, or decision-making aligned with real-world choices that a patient, caregivers or stakeholders would need to make. The sessions can also include live engagement of patients, caregivers, patient advocacy organizations, and healthcare providers who join in the discussion and validate the meaningful solutions. Invariably, these sessions result in “aha” moments that provide insights that would have been difficult to identify in any other way. The team then works together to figure out solutions to the challenges identified and prioritize strategies to implement them.
Feedback from both internal and external LEAP participants has been overwhelmingly positive.
"LEAP day sessions remind us to pause and take stock of our thinking, our assumptions and our activities with a singular purpose: how will this add value or positively impact a patient? It was inspirational and humbling!” – Alexion employee LEAP participant
“It's been a very different experience ... The participant group has been much broader, very engaged and the concept of moving through different phases of the patient journey has been really interesting to me … the format has really encouraged much broader, more open discussions” – External stakeholder LEAP participant
While the primary purpose of LEAP is to help employees better understand the complexity of the patient journey, Alexion has realized numerous unexpected benefits since launching the program:
- Developing Cross-Functional Relationships: During a LEAP session, employees often work with team members whom they’ve never met. The opportunity to share ideas across countries, functions and roles builds important connections.
- Producing More Engaged Employees: Alexion has found that LEAP results in better active listening and mindset shifts toward more empathetic interactions. It also helps deepen patient insights and informs the company’s strategy.
- Supporting External Relationships: LEAP encourages participation from external stakeholders, which creates beneficial two-way communications. External stakeholders have received customized tools, education and guidance tailored to their needs and recognized the patient-centric approach that LEAP enables Alexion to pursue.
- Emphasizing Alexion’s Commitment to Diversity, Inclusion and Belonging: When developing LEAP, Alexion was intentional about highlighting diverse stakeholders, choosing diverse talent to authentically match characters and adding pronouns for each character in the LEAP simulations.
To date, more than 3,500 team members from 45 countries and 75 external stakeholders have participated in Alexion’s LEAP Program, gaining understanding by walking alongside patients on their journeys.
“This program has become a part of the fabric of this organization, and it has been truly transformational,” said Sonia Singhvi, Head of Culture. “The positive ripple effects have inspired us to continue listening, learning and advancing for our patients, the communities we serve and each other.”
To learn more about Alexion’s unique corporate culture, visit: https://alexion.com/your-career/working-here/culture.