NHS Digital – Supplementary written evidence (INQ0095)

Supplementary evidence from Dr Jem Rashbass and Chris Roebuck following an evidence session on Tuesday 25 February.

Thank you very much for inviting Chris Roebuck and I to give evidence to your Committee inquiry on Ageing: Science, Technology and Healthy Living on Tuesday 25 February.

During the discussion, Viscount Ridley asked a question, the answer to which we did not have directly to hand. We are most grateful to Viscount Ridley and your Committee for giving us the opportunity to respond more fully in writing.

You will find our response to Viscount Ridley’s question below, which was brought together with the kind support of the UK Biobank.

Response:

UK Biobank recruited 500,000 men and women aged 40-69 years between 2006 and 2010, all of whom are exceptionally well characterised. As a longitudinal cohort, UK Biobank is following the health of all participants who are now in their mid-60s to late-70s. As such, it is one of the largest studies to be able to do robust research now into the causes and determinants of health outcomes that are relevant to the older population (e.g. cardiovascular disease, cancer, dementia, etc.). Over time, it will become increasingly relevant as more people develop more health outcomes. For example, by 2026 there will be about 43,000 incident (i.e. newly diagnosed) cases of dementia and 9,500 incident cases of Parkinson’s disease in the whole cohort. Over half (about 60%) of these cases will be first identified in primary care and so access to these data is by far the best means of studying these diseases.

The value of UK Biobank lies not only in its size, but in the breadth of data collection. In addition to the linked health records, data on lifestyle and environmental factors, genomics (including sequencing), biomarkers (including telomere length and metabolomics), and imaging (including brain, heart and body scans) means that UK Biobank is a unique resource to answer important research questions about the determinants and mechanisms of ageing and its associated health outcomes. In particular, the availability of repeated measures (such as cognitive function tests and imaging scans) over time also enables researchers to better characterise changes over time related to preclinical stages of disease. This is of particular importance for dementia where long-term epidemiological studies – where lifestyle and other risk factors are assessed many years prior to disease development – are needed to identify the causal determinants. Research performed by the Million Women Study (MWS) investigators has shown that a follow-up time of at least 15 years is needed to accurately distinguish between potential causal risk factors and those that are affected by behavioural changes related to the gradual pro-dromonal stage of the disease (Floud S et al., Neurology 2020; Pubmed ID: 31852815). As women in the MWS are now in their mid-80s, the very large numbers of dementia cases that are expected to occur over the next 5-10 years will provide invaluable insight into its lifestyle determinants. However, the current inability to share with other researchers the linked NHS Digital data for this cohort means that the wider community cannot benefit from using this study for ageing-related research.

For UK Biobank, there are already over 14,000 registered users of UK Biobank and over 1,000 publications. Given the extraordinary amount of data available to the research community – both now and over the next few years – world-class research into the determinants of dementia and other age-related outcomes that could be used to inform public health policy is already well within reach.

I do hope the above answers Viscount Ridley’s question, and – again - we are very grateful for the opportunity to provide this follow up in writing.

13 March 2020