Collaborate and co-create
What we commit to
We will continue our transparency in current and future partnerships with patients and co-creating based on priorities and challenges of different patient communities in a mutually respectful, equitable manner.
We will endeavour to involve patient experts as early as Sobi’s business model allows it. We commit to acknowledging, respecting and valuing the knowledge and expertise that patient experts bring to the table in the co-creation process.
We will evaluate and adapt our approach to patient expert co-creation on an ongoing basis, striving for continuous improvement.
What we have done so far
Sobi actively co-creates with patients through initiatives such as the establishment of patient councils, which provide valuable insights into patient-oriented initiatives, and the production and execution of awareness campaigns that highlight the challenges faced by individuals living with rare diseases.
For example, Sobi’s Community Engagement team initiated the Haemophilia Patient Innovation Forum. Patients and family members from eight countries actively participate. They co-create ideas, activities and services to improve health outcomes. The forum focuses on joint health, exploring patient experiences and unmet needs.1
Measurement
We will measure impact through:
- Number of patient councils and projects co-created
- Number of patient council inputs translated into tangible changes e.g. increased number of people living with rare diseases leveraging, or benefitting from co-created tools, improved physician-patient dialogue, improved awareness of the importance of quality of life and informed decision making
Involvement
The Sobi departments involved are:
- Patient Engagement
- Compliance
- Medical
- Legal (depending on project)
References:
- Sobi. Patient Voice Central to our R&D. Available at: https://www.sobi.com/en/news-releases/patient-voice-central-our-rd.