Skip to main content

Managing routinely collected NHS data for research

Health research using routinely collected National Health Service (NHS) data derived from electronic health records (EHRs) and health service information systems has been growing in both importance and quantity. Wide population coverage and detailed patient-level information allow this data to be applied to a variety of research questions.

The sensitivity, complexity and scale of such data also hamper researchers from fully exploiting this potential. In an article published in the journal Informatics in Primary Care, Vasa Curcin and colleagues examine the current challenges preventing researchers from making optimal use of the data sets at their disposal, on both the legislative and practical levels, and give recommendations as to how these challenges can be overcome.

Several projects have recently been launched in the UK to address poor research data-management practices. Rapid Organisation of Healthcare Research Data (ROHRD) at Imperial College, London produced a useful prototype that provides local researchers with a one-stop index of available data sets together with relevant metadata. Curcin and colleagues reported that increased transparency of data sets' availability and their provenance leads to better utilisation and facilitates compliance with regulatory requirements.

They concluded that research data resulting from NHS data is often not utilised fully, or is handled in a haphazard manner that prevents full auditability of the research. Furthermore, lack of informatics and data management skills in research teams act as a barrier to implementing more advanced practices, such as provenance capture and detailed, regularly updated, data management strategies.

Comments

Popular posts from this blog

What is the difference between primordial prevention and primary prevention?

Primordial prevention and primary prevention are both crucial strategies for promoting health, but they operate at different levels. Primordial prevention aims to address the root causes of health problems and improve the wider determinants of health. It focuses on preventing the emergence of risk factors in the first place by tackling the underlying social, economic, and environmental determinants of health. This involves broad, population-wide interventions such as: Policies that promote healthy food choices: Think about initiatives like taxing sugary drinks to discourage unhealthy consumption, or providing subsidies for fruits and vegetables to make them more accessible. Urban planning that prioritises well-being: This could include creating walkable neighborhoods with safe cycling routes, ensuring access to green spaces for recreation and relaxation, and designing communities that foster social connections. Social programs that address inequality: Initiatives aimed at reducing pov...

UK Covid-19 Inquiry - The Importance of a Strong Primary Healthcare System

In my witness statement for Module 10 of the UK Covid-19 Inquiry, I discuss the pandemic's impact through from the perspectives of  primary care and public health, drawing on my extensive experience as a senior academic at Imperial College London and as a practising GP and NHS Public Health Specialist.  I emphasise that the pandemic disproportionately affected people who were clinically vulnerable, the disabled, ethnic minority communities and those living in deprived areas. The pandemic highlighted how structural inequalities, multigenerational housing, and employment in high-risk frontline roles exacerbated health disparities.  My statement also critiques the weakening of public health infrastructure - particularly for the control of infectious diseases - and the lack of integrated health data systems to identify at-risk groups such as the clinically vulnerable. I also advocated for a more robust preventive healthcare model that prioritises community-based primary care ...

Protecting Young People from Meningococcal B Disease: The NHS Targeted Vaccination Programme

Meningococcal group B (MenB) infections are rare but can have devastating consequences. The decision to offer a targeted two-dose vaccination programme to Year 13 students and young people entering university or residential further education reflects concerns about recent outbreaks of meningococcal disease and the higher risk of transmission when large numbers of young adults mix closely for the first time in shared accommodation. The MenB vaccine has a well-established safety record, and evidence from the UK infant immunisation programme has shown substantial reductions in disease among vaccinated children. A targeted programme for those entering higher-risk settings is therefore a reasonable precautionary measure while further evidence is gathered on whether the recent increase in clusters represents a temporary fluctuation in disease patterns or a more sustained change in the epidemiology of MenB infection. The success of the programme will depend on achieving high uptake and ensuri...