It is widely acknowledged data will play an increasingly important role in future healthcare design, delivery and review. There is increasing awareness of the benefits of using data related to patients and their health conditions to improve healthcare (Goldacre and Morley, 2022). Examples in prosthetics being the development of national registries in Sweden and the USA.
However, despite the intent and popularity of registries, few have realised their full potential and struggle to evidence impact on patient outcomes, leading to calls for more patient-centred approaches (Nelson et al., 2016). Large scale patient-centred data systems which include patients in development and leadership, and collect data which matters to patients, which patients and clinicians can use, have been shown to improve healthcare (Crandall et al., 2012).
This symposium consists of four short presentations seeking to explore patient centred data collection in prosthetic rehabilitation. The first will outline a scoping review, synthesising evidence for and examples of patient-centred data collection systems. The second will present findings from a large UK qualitative study exploring patient and stakeholder views on the value, utilisation and sharing of data, articulating patient-centred data collection requirements in prosthetic rehabilitation. The third will describe the development of a patient core outcome set, the ECLIPSE model, which could inform the collection of meaningful outcome data from the patient's perspective. The final presentation will provide a real-world example of how patient-centred approaches in research and design informed the development of a digital app allowing patients to collect and monitor socket comfort data.
Statement of the objective / learning objectives
Symposium attendees can expect to:
• Gain an understanding of current evidence for patient-centred data systems.
• Understand stakeholder views on data use in prosthetic care settings.
• Describe patient-centred outcome domains in prosthetic care.
