Data Access Register - full project summary

We will study the impacts of health care disruption (e.g., delays and confusion over service delivery) in the UK. We will examine the experiences of those individuals affected by this disruption, including whether it has affected their health. We will share the findings with policy makers, NHS care managers, and politicians to help inform:

• Which services to invest in or act on first,
• Which types of people need additional help.

Our study will help benefit patients and lessen the effects of the problem.

Having access to the linked data is necessary to understand the experiences of patients. We do not know exactly how people used healthcare services during the pandemic in the surveys. While people in the surveys are asked if they experienced some disruption, how this relates to their actual use of healthcare is unclear. The linked data will allow us to examine the types of healthcare people used, their experiences, and any health conditions diagnosed during the pandemic. Only through having access to all of this information can we begin to track how healthcare disruption impacts health. This is not currently possible through other data sources. We are not aware of another study doing this research.

Study Data

• National Survey of Health Development Cohort 1946 Birth Cohort (NSHD46)
• Southall and Brent Revisited Study (SABRE) (non-linked data only)
• English Longitudinal Study of Ageing (ELSA)
• 1958 National Child Development Study (1958 NCDS)
• British Cohort Study 1070 (BCS 70)
• NEXT STEPS
• Millennium Cohort Study (MCS)
• Genetic Links to Anxiety and Depression (GLAD) Study
• TWINS UK
• Track-COVID
• Generation Scotland
• NIHR BioResource COPING
• Extended Cohort for E-Health, Environment & DNA (EXCEED)
• Understanding Society (UK Household Longitudinal Study)
• Born in Bradford

Linked Data

• Covid-19 Vaccination Status
• Medicines Dispensed in Primary Care (NHSBSA Data)
• Hospital Episode Statistics Critical Care
• Hospital Episode Statistics Admitted Patient Care
• Hospital Episode Statistics Outpatient
• Hospital Episode Statistics Accident and Emergency
• Civil Registration – Deaths
• Electronic Communication of Surveillance in Scotland (ECOSS)
• Public Health Scotland / NHS Prescription Data (PIS)
• Public Health Scotland / NHS SMR01 General / Acute Impatient and Day Care
• Public Health Scotland / NHS Vaccination Data

Health services across the UK struggled to cope during the COVID-19 pandemic. Many treatments were postponed or cancelled. For example, there were fewer GP or hospital appointments, cancer treatments and scheduled surgeries. Sometimes there were no medications available for people who needed them.  

We looked at the experiences of those people affected by this disruption. We wanted to find out if this had an effect on their health. For example, if people ended up in being in hospital for conditions that may have been prevented.  

We used data on 29,000 people in England from seven longitudinal (measurements taken over time) cohort (a group of people) studies linked to electronic health records from NHS England through UK Longitudinal Linkage Collaboration.  

35% of people had some form of disrupted access to healthcare and these people were more likely to end up in hospital as an emergency. For most people this was because they missed appointments or treatments.  

Only small number of people ended up in hospital because they couldn’t get medications. This is because pharmacies were open during the pandemic and coped well.  

Our findings show the need to invest in the health system to deal with the negative effects of healthcare disruption resulting from the COVID-19 pandemic.  

Link: https://www.medrxiv.org/content/10.1101/2023.02.01.23285333v1