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 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.
Award-winning co-created patient and HCP (healthcare professional) campaigns, like Find Your Balance and Ask Your Patient, are examples of how Sobi has shared stories of individuals living with ITP and co-created discussion guides, checklists and other useful explainers on how to actively participate in patient-HCP discussions.1
In PNH, Sobi has created my-PNH as a repository of useful resources for patients to actively participate in discussions around their care.2
In haemophilia, several IDM global and local initiatives were deployed, e.g. for World Haemophilia Day.3
In DLBCL, Sobi is launching The Right Words: a patient and caregiver campaign that reinforces the need for an informed decision-making process about treatments and paths to care.
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. Your ITP Discussion Guide. Available at: https://www.itpsupport.org.uk/download/ITP_Discussion_Guide.pdf.
- my-PNH. What is PNH? Available at: https://my-pnh.com/.
- Sobi. World Haemophilia Day 2022: Sobi’s Position Statement. Available at: https://www.sobi.com/en/news-releases/world-haemophilia-day-2022-sobisposition-statement.