An international comparison of longitudinal health data collected on long COVID in nine high income countries: a qualitative data analysis

Background: Long coronavirus disease (COVID) presents a significant health challenge. Long-term monitoring is critical to support understanding of the condition, service planning and evaluation. We sought to identify and examine longitudinal health data collected on long COVID to inform potential decisions in England regarding the rationale for data collection, the data collected, the sources from which data were collected and the methods used for collection. Methods: We included datasets in high-income countries that experienced similar coronavirus disease 2019 (COVID-19) waves to England pre-vaccine rollout. Relevant datasets were identified through literature searches, the authors’ networks and participants’ recommendations. We undertook semi-structured interviews with individuals involved in the development and running of the datasets. We held a focus group discussion with representatives of three long COVID patient organisations to capture the perspective of those with long COVID. Emergent findings were tested in a workshop with country interviewees. Results: We analysed 17 datasets from nine countries (Belgium, Canada, Germany, Italy, the Netherlands, New Zealand, Sweden, Switzerland and the United Kingdom). Datasets sampled different populations, used different data collection tools and measured different outcomes, reflecting different priorities. Most data collection was research (rather than health care system)-funded and time-limited. For datasets linked to specialist services, there was uncertainty surrounding how long these would continue. Definitions of long COVID varied. Patient representatives’ favoured self-identification, given challenges in accessing care and receiving a diagnosis; New Zealand’s long COVID registry was the only example identified using this approach. Post-exertion malaise, identified by patients as a critical outcome, was absent from all datasets. The lack of patient-reported outcome measures (PROMs) was highlighted as a limitation of datasets reliant on routine health data, although some had developed mechanisms to extend data collection using patient surveys. Conclusions: Addressing research questions related to the management of long COVID requires diverse data sources that capture different populations with long COVID over the long-term. No country examined has developed a comprehensive long-term data system for long COVID, and, in many settings, data collection is ending leaving a gap. There is no obvious model for England or other countries to follow, assuming there remains sufficient policy interest in establishing a long-term long COVID patient registry.