COLLABORATE to improve dialogue and outcomes
What we commit to
We aim to foster patient-healthcare professional dialogue, education and a decision-making process that prioritises real patients’ real needs and goals.
We will continue to advocate for Informed Decision Making (IDM) in all aspects of our work, ensuring that people living with rare diseases are active participants in discussions where shared decisions about their care are made.
We commit to creating more opportunities for open, constructive dialogue with the patient community, seeking their input and feedback on a regular basis.
What we have done so far
Sobi has consistently collaborated with the patient community to champion informed decision making, firmly believing in the power of this approach to enhance patient care and outcomes.
In Immune Thrombocytopenia (ITP), we have worked with HCPs (healthcare professional), patients and patient organisations to support the development of guides, toolkits and campaigns to help people actively participate in patient-HCP discussions. These include the ITP Discussion Guide, Shared Decision Making tools, and the No Bad Blood Campaign.1,2
In Haemophilia, as well as driving informed decision making through our haemophilia focused website 'Liberate Life', including social campaigns to raise awareness of the information hub, we worked with The Haemophilia Society to develop the Adam the Adventurer books, which help educate young people with haemophilia about the condition, and support their parents and carers.3,4
Measurement
We will measure impact through:
- Number of new solutions provided in collaboration with the patient community on informed decision making
- Number of website visits
- Number of downloads
Involvement
The Sobi departments involved are:
- Patient Engagement
- Compliance
- Legal
- Medical (depending on project)
References:
- ITP Support Association. Your ITP Discussion Guide. Available at: https://itpsupport.org.uk/download/ITP_Discussion_Guide.pdf
- ITP Support Association. No Bad Blood. Available at: https://itpsupport.org.uk/no-bad-blood-a-film-by-uk-itp-patients/
- Liberate Life. Available at: https://liberatelife.co.uk
- Adam the Adventurer. Available at: https://haemophilia.org.uk/product/adam-the-adventurer-and-his-quest-to-learn-more-about-haemophilia/
May, 2025