P203: Working with Patient Councils to Mitigate Drug-Related Risks
Poster Presenter
Raphael Elmadjian Pareschi
Patient Safety Lead/ Head of Pharmacovigilance Brazil
Roche Brazil
Objectives
Present the case already published in DIA Global Forum as "Working with Patient Councils to Mitigate Drug-Related Risks" - (https://globalforum.diaglobal.org/issue/december-2023/working-with-patient-councils-to-mitigate-drug-related-risks/)
Method
Working with local ophthalmology Patient Council as part of its ARMM validating educational materials in two rounds: One to review the first version of educational materials the company prepared, and the second to present the adapted material to patients after incorporating feedback.
Results
At the end of the process, they expressed their satisfaction in response to these four questions:
How does the solution help you better understand the target disease?
The materials help patients to be better informed and safer.
Did the solution help you (the patient) engage with your doctor about your treatment?
100% of patients responded yes and found the materials useful for engaging with their doctor.
Would you recommend this solution (educational material) to a friend or colleague?
100% of patients would recommend the material to friends or colleagues.
On a scale from 1 to 5, how do you rate your overall satisfaction with this solution?
Their overall satisfaction was 4 out of 5 because they would like to see versions in Braille and in sign language.
Conclusion
As patient-centricity becomes more prevalent in pharmaceutical industry discussions around the globe, the science of pharmacovigilance is simultaneously evolving to improve how it engages with the patients being treated by these pharmaceutical solutions. This case study provides insights on how to promote inclusion and put patients at the center of discussions about solutions aimed for their use. Co-creation of risk communication solutions, part of the regulatory requirement for mitigation measures, more effectively ensures that these communications reach their full potential in their target audience.
Another conclusion is that patient safety cannot be achieved by working in silos. External and internal integration and partnerships (with different organizations, and across different departments) are essential to get the “view from outside” (customer) perspective.
Finally, we would all be wise to bring our own lived experience with diversity and inclusion into practice and to follow the familiar patient advocate refrain: “Nothing about me, without me.”
