Feasibility, acceptability, and added value of electronic patient-generated data on self-care use for people with musculoskeletal conditions: a mixed method study

Background: Self-care for people with musculoskeletal conditions often includes taking pain-relieving medication at times of need and organising help with daily activities (social care). Information on this self-care is not systematically documented by healthcare providers but could be generated by patients themselves. Aims: To assess the feasibility, acceptability and added value of electronic patient-generated data on opioid, over-the-counter medication and supplement use, and social care use in people with musculoskeletal conditions. Methods: Adults with a musculoskeletal condition from an outpatient department in England completed a web-based questionnaire on their medication and/or social care use every two weeks for six months. Using a sequential mixed-methods approach, we analysed questionnaire response rates and completeness, and transcripts from interviews with patients. We also compared patient-generated self-care data to data recorded in electronic health records. Results: Of 102 people invited, thirty-six consented to take part; reasons to decline included no access to technology or unwillingness to use it for collecting self-care data, and physical limitations due to people’s condition. All those consenting completed at least one questionnaire, with twenty-two of them completing ≥80% of questionnaires. Participants identified potential benefits of data collection (e.g., to support self-monitoring and patient-led consultations) and considered it feasible to continue this longer term. We found that patient-generated self-care data contributed new information on (changes over time in) medication (e.g. medication frequency, side effects, and supplement use) and social care use (e.g. level of formal/informal support received) compared to data in the electronic health record. Conclusions: People with musculoskeletal conditions found it feasible and acceptable to collect electronic patient-generated data on self-care, which complemented information recorded by clinicians in electronic health records, including changes in self-care use over time. Healthcare providers should therefore consider collecting patient-generated self-care data to enhance service delivery and patient outcomes, and to enrich musculoskeletal research. Clinical trial number: Not applicable