Patient voice central to our R&D

1 July, 2021 11:30

Our patient councils bring the patient voice into our research & development and future clinical studies. They are just one way we keep the focus on providing innovative treatments that transform life for people living with a rare disease.

At Sobi, we have a long history of bringing a patient-centric approach to the development of innovative therapies. But what does patient-centric mean?

For us, it means putting the patient at the centre of decisions that affect them. This has led for example to the development of syringes and packaging that are easier for patients with joint problems to use, and the creation of formulations of a medicine that are better suited to infants and adults.

It also means being engaged in a continuous dialogue with the rare disease patient community. Our engagement with the patient community is based on three elements: enabling connectedness, ensuring sustainable access to care, and giving a voice to patients to express their needs related to care. This can be seen in the way we involve patients during the entire course of a clinical study, from planning to carrying out and closing the study.

In the past few months, we have hosted two successful patient councils, looking at future clinical research. Each brought together patient organisations from across the US and Europe together with cross-functional Sobi teams including clinical science, clinical program management, community engagement, legal and compliance.

We will continue to work with the participants of the patient councils, and we are looking at creating new patient councils for other future studies.

Co-creation
In another new activity for this year, our Community Engagement team created the Haemophilia Patient Innovation Forum, working with patients or patients’ family members as an engine of co-creation, designing and pressure-testing ideas, activities and services for better health outcomes. The first forum meeting, with patients and family members from eight countries, focused on joint health, exploring patient experiences, perceptions and unmet needs around joint health and together identifying topics for content development and individualised solutions.

Jason Donohue, Sobi Community Engagement Director and one of the organisers of the patient councils, says Sobi sees early engagement of the patient voice is vital to ensuring well-designed and executed clinical studies, minimising the burden of clinical studies, and paving the way for the future delivery of medicines that align with patient needs.

Patient voice central to our R&D

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