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Finalist

Liberate Life: Creating Evidence-based Digital Tools to Enable the Patient Community to Live Life Beyond Haemophilia

by Health Unlimited for Sobi (Swedish Orphan Biovitrum AB)

Summary of work

The Liberate Life is a platform of tools and resources to help patients with haemophilia live the life they want beyond their condition. Through various formats, the platform looks at the whole patient journey and helps patients manage their haemophilia and achieve the goals they set in life. The platform was co-created by people with haemophilia and healthcare workers to better improve communication between each other and to increase patient decision making.
The approach taken to develop the platform was based on a combination of research including ethnographic, workshops, interviews and peer-reviewed literature. An initial pan-European ethnographic study focused on the unmet needs of people with haemophilia. The results were then refined during subsequent workshops with patients and clinicians which identified six key outcomes to improve communication and access. Once the platform was built it was pressure-tested by the users and their feedback used to improve the tools. The digital tool gathers metrics and we continue to receive qualitative insights and feedback from the pilot centres where it has been very positively received.
Sobi has a strong history in care for rare diseases. As a medium-size pharma organisation we believe in grassroots partnerships for transforming haemophilia care and patients’ lives.

To date, the program has successfully generated and leveraged data through newly established channels and partnerships with engaged stakeholders. The program has already successfully influenced clinical practice and policy at global, country and clinic levels via novel insights and targeted, patient-focused solutions. Adherence is gaining the attention it has long needed, and real-world outcomes will improve as a result.

Judges’ comments

We saw a good use of research-based insights to determine what needed to be done resulting in a good use of data that they used and optimised to ensure effectiveness. An easy-to-follow entry from Health Unlimited and Sobi that was specific about objectives and outcomes.