Co-creation of the Global Patient Experience Data Navigator: a multi-stakeholder initiative to ensure the patient voice is represented in health decision-making.

Engaging patients at the start of healthcare and medical product development projects can help better understand their experiences and what is most important to them. Ultimately this will achieve the best outcomes. However, if not carefully planned, projects that engage patients can lead to inefficiencies, such as patients being asked for the same information repeatedly. The collection of patient experience data­information related to patients' experiences, needs, and priorities­also needs to be carefully managed. To help solve this problem, Patient Focused Medicines Development developed a publicly available "toolkit" called the Global Patient Experience Data Navigator. The Navigator has downloadable templates that can be filled in and used for projects in any disease area and by anyone collecting patient experience data. To represent different perspectives, individuals with a range of experiences and understanding of patient engagement projects worked together to co-create the toolkit. Several meetings took place to understand what the toolkit needed to do and to help provide a structure for the templates. There are four templates in the toolkit. These can be used to: (1) prioritize outcomes that matter most to patients and their caregivers; (2) select the best ways of measuring these outcomes; (3) identify when, why, and by whom patient experience data is used throughout the product development cycle; and (4) identify when, why and by whom patient experience data is used throughout the healthcare process. Future work will utilize public feedback to make the toolkit more user-friendly and provide education on how the Navigator can be used.