Accessibility and flexibility

Information and project materials (e.g., synthesis of study findings on mapped concepts; concept-to-item matrix to critically appraise PRO instruments) were made as accessible as possible to all team members, by avoiding jargon and terms unlikely to be understood by all team members, providing visuals and documents that were easy to navigate and respond to, and including probes (e.g., for feedback on draft conceptual models, cardinal concepts, or relevance of legacy instruments). Information was shared with patient experts verbally and in writing, with the opportunity for feedback in either format. Glossaries of research terminology were provided for presentations and ongoing reference.

Meeting materials and information were emailed at least 1 week in advance, with deadlines for feedback specified. Meeting times and locations were limited by geography; most occurred by web conference, with one face-to-face event. Consideration was given to the length of virtual and face-to-face meetings, as well as including breaks, and providing accessible overnight accommodation for patient experts for the face-to-face event. Where possible, meetings were recorded and summary notes circulated for those who could not attend.

UCB and the POs agreed to have the patient experts involved in select areas of decision-making, which were discussed with the patient experts and amended throughout the process to suit their individual needs. Patient experts were asked how much they wished to contribute to the project, at which timepoints, and in what manner, to accommodate their abilities with respect to their Parkinson’s and time periods they wished to commit to the work. They were also informed of the ways of being involved, which reflected professional experts’ opinions on where involvement of patient experts could be of most value. Each patient expert was provided with a role description outlining the areas in which their involvement was anticipated. This was discussed, agreed, and amended to ensure each patient expert’s role was suited to the commitment they were able to make. For the purposes of respect and availability, all stakeholders could communicate with each other at any time to build trust as the project evolved. Patient experts had dedicated contacts at their PO, and the pharmaceutical company and staff from the relevant PO worked together to coordinate all work.