Exley, Josephine, Stubbs, Ed 
ORCID: 0000-0003-1464-8361, Wittenberg, Raphael ORCID: 0000-0003-3096-2721 and Mays, Nicholas
(2024)
An international comparison of longitudinal health data collected on long COVID in nine high income countries: a qualitative data analysis.
Health Research Policy and Systems.
ISSN 1478-4505
(In Press)
Abstract
Background Long 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 in terms of: the rationale for data collection; the data collected, from whom and how. Methods We included datasets in high-income countries that experienced similar 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, Netherlands, New Zealand, Sweden, Switzerland and 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.
| Item Type: | Article |
|---|---|
| Additional Information: | © 2025 The Author(s) |
| Divisions: | Care Policy and Evaluation Centre |
| Subjects: | R Medicine > RA Public aspects of medicine > RA0421 Public health. Hygiene. Preventive Medicine |
| Date Deposited: | 18 Feb 2025 16:06 |
| Last Modified: | 18 Feb 2025 16:07 |
| URI: | http://eprints.lse.ac.uk/id/eprint/127352 |
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