Abstract
Background: The Universal Patient Language (UPL), is a set of resources developed by Bristol-Myers Squibb, to help communicate with patients about complex topics. At the core of the UPL are seven foundational principles. BMS applied these principles to create a UPL version of Important Safety Information (ISI). Before and during oncology treatment, patients need to understand the treatment’s risks, benefits, and other important information on how to take the medicine and drug interactions. Pharmaceutical companies communicate these details through the ISI. Traditionally, ISI is developed within a fixed, text-only template working within specific FDA guidance. The goal was to redesign how ISI is communicated by applying the UPL, to make it more inviting for patients to read, and potentially easier to understand. We started with a specific drug’s ISI, with the goal of using the output as a starting point for redesigning ISI for other BMS medicines. Method: Co-creation, the core method of applying the UPL, is a service-design technique that brings together multiple perspectives to reimagine and build new materials. To design a UPL version of ISI, a co-creation session was held with patients, communication experts and BMS employees with knowledge of the relevant regulations. Together, participants identified ways to improve ISI, and built rapid prototypes of what a UPL ISI could look like. The prototypes that emerged were further refined and validated with patients and BMS stakeholders. Results/outcome: The first UPL ISI was included in patient-facing brochures and released in 2015. The UPL redesign is much more visual, using whitespace, icons and simpler language. It also includes additional information, based on what patients said was important to them at the co-creation. To date, three different BMS products have implemented the UPL ISI. Enterprise templates and usage guides for ISI have also been created for other brands looking to use the UPL ISI. In small-scale testing, participants consistently responded positively to the design’s ability to help in identifying the most relevant information, and communicating the importance of following the instructions. These effects were stronger for respondents who had a treatment-appropriate diagnosis. In qualitative interviews, patients were overwhelmingly receptive to the new design—one patient said “I would put it on my fridge”. Implications: The UPL tool can be used in oncology to help make complex information easier for patients to understand. The UPL ISI is just one application and other case studies and tools can be found on UPL.org.