The better the question
How do you raise awareness of an inherited, hidden disorder?
FH Europe sought ways to involve all stakeholders in better outcomes for people born with inherited lipid conditions.
FH Europe is a non-profit organization in the healthcare and life science sector, founded as a European network of patient organizations, which are within countries and dedicated to the same purpose. Through an EY Ripples project, EY supported the organization’s desire to evolve towards a purpose-driven agenda for the benefit of all families affected by inherited dyslipidemias. Dyslipidemia refers to unhealthy levels of one or more kinds of lipid (fat) in the blood which often leads to premature cardiovascular disease. An example is familial hypercholesterole (FH) which causes lifelong severe elevation of blood cholesterol.
FH affects around 1 in 311 people across Europe, making it the most common genetic condition in the world. However, 90% of people born with it are undiagnosed, not treated in a timely and optimal manner, and at high risk for a heart attack early in life.
FH Europe’s team consists of highly motivated individuals, eager to make a positive impact on people across Europe and beyond. They do it by being supportive, collaborative and innovative. They were striving for the utopia state, in which, together with aligned patient organizations and other stakeholders, they would be able to prevent early heart attacks and deaths associated with dyslipidemia.
FH Europe aims to be the center of an ecosystem, collaborating and connecting various stakeholders from patient organizations, pan-European policymakers, impacted families, pharmaceutical companies, and healthcare providers.
The key challenges they face include low levels of stakeholder or “customer” intimacy and general awareness about the disease, as well as negative social stigma. Connecting and collaborating with patients and other stakeholders was seen as critical in providing a voice to patients (and potential patients) on a pan-European level. To overcome these challenges and become a recognized patient-centric organization, FH Europe’s purpose, vision, mission, and business model needed to be refined.
The better the answer
Co-creation using EY wavespace
Transforming a complex stakeholder ecosystem.
Together with EY, FH Europe leveraged EY wavespaceTM to co-create an evolved strategy and purpose using a future-back approach based on EY’s Transformation Realized approach. EY supported the journey with an experienced cross functional team including transformation leaders, healthcare specialists and a wavespace experience designer. Various external experts and stakeholders, including funders, industry experts and beneficiaries, were involved to provide additional insights. This powerful combination created an iterative working atmosphere complemented by a future-back approach. In this environment, FH Europe identified their utopia state, revised their purpose, vision and mission statements. As well as they mapped out their beneficiaries and stakeholders and the value proposition, developed a sustainable business model and visionary transformation journey.
The complexity of the stakeholder ecosystem provided an exciting challenge and the journey was thoroughly enjoyed by the participants.
The better the world works
Countless lives impacted by the ripple effect
A voice for patients, an end to unnecessary deaths.
Through their collaboration with EY, FH Europe has a new customer-centric purpose, vision, mission and value proposition for their stakeholders. As they go about realizing these, they also benefit from a clear set of priorities. FH Europe’s transformation will enable support for a community of patient ambassadors and drive patient-centric policies, treatments, and collaboration, all while making sure that patients’ voices are heard.
We certainly hope (and believe) that the ripple effect will make the desired utopia state a reality. The result: an end to unnecessary heart attacks, consequences and deaths from these diseases, an increase in awareness and a decrease in stigma.
The exercise was invaluable in refining and aligning the Board’s vision and the organizational purpose, and in helping us to fix our priorities to secure the biggest impact on this little-known, but insidious and surprisingly common set of conditions.
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