Patients recovering from knee replacement surgery are now using a tablet-based pain diary called the PainPad, which has already logged data from over 500 patients at Milton Keynes University Hospital. The problem is that this rich data is typically discussed one-on-one between patient and clinician, leaving patients with little opportunity to explore their own pain patterns in a collaborative way. This project will bring together a Dutch expert in collaborative sensemaking—where people work together to understand personal data—with the UK team behind the PainPad. They will explore how patients could use their own pain data to make sense of their recovery, rather than just reporting symptoms. If successful, this approach could shift how clinical data is used: instead of being a one-way report, it becomes a tool for shared understanding between patients and healthcare teams. The research is exploratory and focused on building a research consortium for future European funding, but it addresses a real gap in how patient-reported outcomes are currently used in orthopaedic care.
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Collaborative data-centric design and sensemaking activities support individuals’ understanding of their own data. This contrasts with the approach commonly used in the medical domain, where Patient Reported Outcome Measures (PROMs) are discussed individually between patient and clinician. This proposal will: Explore overlaps in design and analysis approaches between sensemaking and digital health researchers, and consider methods for using sensemaking approaches to support collaborative sensemaking with patients using PROMs data. Build on this knowledge exchange to establish the key research questions on supporting patients to make use of sensemaking, and to build a consortium for Horizon Europe grants. Dr Bourgeois (Delft University of Technology (NL)) has a significant track record in different approaches to collaborative sensemaking. This work has used health-related data which is not clinically sensitive, such as heart rate and sleep tracking. He has already explored the benefits and challenges of using sensitive health data by working with people who are tracking menstruation data; this project would expand their research to also consider clinical data, principally pain data. Dr Gooch (Open University) has been working with colleagues at Milton Keynes University Hospital (MKUH) on an effective method for logging pain data called the PainPad. Designed for joint-replacement patients, the system has been used by over 500 patients. Analysis has shown that the PainPad provides many benefits, including greater accuracy and volume of data collected. At the request of MKUH clinical colleagues, data has been analysed from a cohort perspective, demonstrating the use of a tourniquets during Total Knee Arthroplasty does not result in greater patient pain. We have also established a more detailed profile of how patients’ pain changes in the days after their operation. This proposal will provide Dr Gooch with the support to visit Dr Bourgeois’ and his research team at Delft University of Technology, and investigate the potential of using collaborative sensemaking approaches to data analysis.
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