Clinical Research Directory

Presenting Patient-generated Data in axSpA Care

Sponsor: Royal United Hospitals Bath NHS Foundation Trust

Summary

Chronic health conditions are often managed in secondary care services that are facing long waiting lists, limited appointment times, and financial pressures. With the increasing availability of mobile devices including smartphones and wearables, patients can collect vast amounts of patient-generated health data (PGHD) outside of the clinic. This includes symptoms, biometrics and treatment adherence, providing clinicians with a more complete picture of patients' health. This data has the potential to support more insightful patient-clinician collaboration based on lived experiences; to enable remote clinical review; and ultimately, to improve the efficiency and quality of care. Clinicians and patients have expressed significant interest in using PGHD to manage their health, yet most attempts to review this data in clinic are unsuccessful. This project will investigate this problem with a case study in axial spondyloarthritis (axSpA) care. Firstly, a model will be created of how the axSpA care pathway works, including activities, data, and outcomes. Following this a newly implemented PGHD platform for axSpA care at the Royal United Hospitals (RUH) Bath will be evaluated. This evaluation will take place at the RUH, and will involve consultation observations and follow-up interviews with patients and clinicians. It will also involve a series of co-design workshops with patients and clinicians to explore their views on how the current platform may be optimised and improved, including their views on the potential value of predictive analytics. This research will provide insights how the platform is used during consultations, the barriers surrounding its uptake and impact across all parts of the axSpA model, and users' requirements for future versions.

Official title: Evaluating and Co-designing a Secondary Care Clinical Dashboard for Presenting Patient-generated Health Data in Axial Spondyloarthritis (axSpA) Care.

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