Creating a learning health system to include environmental determinants of health: The GroundsWell experience
Year: 2024
Type: article
Abstract: Introduction: Policies aiming to prevent ill health and reduce health inequalities need to consider the full complexity of health systems, including environmental determinants. A learning health system that incorporates environmental factors needs healthcare, social care and non-health data linkage at individual and small-area levels. Our objective was to establish privacy-preserving household record linkage for England to ensure person-level data remain secure and private when linked with data from households or the wider environment. Methods: A stakeholder workshop with participants from our regional health board, together with the regional data processor, and the national data provider. The workshop discussed the risks and benefits of household linkages. This group then co-designed actionable dataflows between national and local data controllers and processors. Results: A process was defined whereby the Personal Demographics Service, which includes the addresses of all patients of the National Health Service (NHS) in England, was used to match patients to a home identifier, for the time they are recorded as living at that address. Discussions with NHS England resulted in secure and quality-assured data linkages and a plan to flow these pseudonymised data onwards into regional health boards. Methods were established, including the generation of matching algorithms, transfer processes and information governance approvals. Our collaboration accelerated the development of a new data governance application, facilitating future public health intervention evaluations. Conclusion: These activities have established a secure method for protecting the privacy of NHS patients in England, while allowing linkage of wider environmental data. This enables local health systems to learn from their data and improve health by optimizing non-health factors. Proportionate governance of health and linked non-health data is practical in England for incorporating key environmental factors into a learning health system.
Source: Learning Health Systems
DOI: 10.1002/lrh2.10461
Authors: Sarah E. Rodgers, Rebecca S. Geary, Roberto Villegas‐Diaz, Iain E. Buchan, Hannah Burnett, Tom Clemens, Rebecca Crook, Helen Duckworth, Mark Alan Green, Elly King, Wenjing Zhang, Oliver Butters
Institutions: University of Liverpool, University of Edinburgh
Language: English
Topic: Data Quality and Management
Field: Decision Sciences
Domain: Social Sciences
Open Access status: gold
Estimated APC paid: $2,380
Funders: Wellcome Trust, Llywodraeth Cymru, Cancer Research UK, National Institute for Health and Care Research, British Heart Foundation, Health Foundation, Public Health Agency, Chief Scientist Office, Scottish Government Health and Social Care Directorate, Medical Research Council, Engineering and Physical Sciences Research Council, Economic and Social Research Council, Natural Environment Research Council, Health and Social Care Research and Development Division, UK Prevention Research Partnership
OpenAlex ID: W4403343208