Connect patients with leadership
What we commit to
We will continue to foster the dialogue at patient council level in haemophilia, ITP, paroxysmal nocturnal haemoglobinuria (PNH), diffuse large B cell lymphoma (DLBCL) and all new disease areas to inform our activity at global and local level.
We will ensure that the patient voice is heard at all levels within Sobi, and that patient needs remain central to our decision-making process.
What we have done so far
At Sobi, we engage with consumers and patients in several different ways and stages. For example, we strive to apply patient centricity in all our ways of working and throughout a medicine’s life cycle to develop solutions that are truly patient led.1
International patient councils were established for haemophilia, ITP, DLBCL and PNH in 2022 and 2023. Sobi’s patient councils play a pivotal role in shaping clinical research and the development of activities and initiatives. These councils bring together worldwide patient organisations, along with cross-functional Sobi teams. Together, they collaboratively plan and execute co-created processes. By involving patient experts throughout the study process, Sobi ensures well-designed trials that align with patient needs.2
Measurement
We will measure impact through:
- Number of meaningful exchanges with patients
- Number of connection points
Involvement
The Sobi departments involved are:
- Patient Engagement
- Compliance
- Medical
- Legal (depending on project)
References:
- Sobi. Annual and Sustainability Report 2022. Available at: https://www.sobi.com/sites/default/files/pr/202303312874-1.pdf.
- Sobi. Patient Voice Central to our R&D. Available at: https://www.sobi.com/en/news-releases/patient-voice-central-our-rd.