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The ways data are used for vital research

30 Nov 2021

Four experts explore how data are used across organisations to improve healthcare and maternity outcomes for everyone.

The impact of the national data opt-out

George Dunn, National Maternity and Perinatal Audit (NMPA) Lead, discusses the impact of the national data opt-out service on research outcomes:

The national data opt-out is a service that allows patients to opt out of their confidential patient information being used for research and planning.

We don’t dispute the need for confidential information to remain protected and people’s privacy respected. However, as a department working in clinical audit and research, these data are vitally important in our goal to improve healthcare for everyone

We have concerns about what it could mean if people opt out of having their data used (anonymously and as part of a very large set of data) for important projects and research.

Even if only a small number of people opt out, we are concerned about how representative this will make the data – especially for those from Black, Asian and minority ethnic backgrounds, or from deprived backgrounds.


Using data to understand inequalities

Dr Jen Jardine, an obstetrician, talks about using data to understand inequalities in maternity care:

At the RCOG, we use data collected during women's healthcare in the NHS to: understand the quality of care given in maternity units; conduct research about stillbirth; provide tailored information for women based on their body mass index; and to understand the impact of COVID infection during pregnancy.

We are currently using this data to investigate inequalities in maternity care for women and babies.

By looking at all women in England, we can obtain an accurate picture of how care and outcomes differ by ethnicity and socioeconomic group. We can then use this information to change guidelines, inform clinicians, and lobby politicians. 

The data we access has information like names and addresses removed, and is held on a highly secure data server which can only be accessed by named researchers with appropriate training.

There's a saying: 'data is power'. Having access to data from women accessing NHS services enables the RCOG to advocate for women, and to ensure that our recommendations are backed up by the best possible information.

Research can be key to understanding disease

Ngawai Moss, Lay Chair of the NMPA Clinical Reference Group, explores how research can lead to changes to the health system:

Health information about the entire population of the UK provides a platform with which to evaluate our health services and make decisions to improve the health of our society.

Research which uses our data can be more effective to highlight patterns of diseases, predict, identify and manage health problems early or assess the safety and effectiveness of interventions.

This evidence can persuade decision-makers to modify health services or encourage us to change our behaviour. The end goal to improve our health and quality of life.

But for this type of research to be relevant and impactful for everyone it’s important that it is both comprehensive and represents us all.

Some people are affected differently by the same disease, if some of us opt out, ultimately it could affect how we understand and care for people with that health condition.

Our health data ‘lake’ and it’s ecosystem must be understood by the public so they have confidence and trust: how it is cared for responsibly, lawfully, securely, fairly, ethically and for the long term.


Data gaps make things difficult

Jenny Kurinczuk, Clinical Epidemiologist, National Programme Lead at MBRRACE-UK and the Perinatal Mortality Review Tool, led from the University of Oxford, shares how data gaps will make it difficult to identify where care needs to be improved:

MBRRACE-UK has the vital role of collecting national data about mothers and babies who die in pregnancy (or soon after) in the process called 'national surveillance'. We also use national birth registration information.

Using the combination of both of these sources of information enables us to calculate maternal and baby death rates for Trusts and Health Boards across the UK and at a national level.

Complete information in both sets of data is vital for the calculation of reliable death rates for individual hospitals and for the calculation of the national death rates.

If individuals ‘opt out’ of having their information used for these purposes then the rates we calculate will simply be wrong.

We know that in some places in the country more people ‘opt out’ of their health data being used for these purposes than in other places.

As a consequence, the rates of maternal and baby deaths will be more seriously affected in some places than others and this risks introducing bias into the figures that we publish.

Once the national ‘opt out’ is applied universally across all health data in England it will no longer be possible to guarantee that the death rate figures we publish are valid.

Without reliable surveillance information, we will be unable to identify Trusts/Health Boards with high death rates where improvements in maternity services and newborn care are needed.

We will also be unable to reliably identify where service quality improvements have been introduced, have made a difference and importantly have led to a fall in death rates.

The UK has been internationally renowned for national surveillance and confidential enquiries into maternal deaths since the first such national confidential enquiry, led by the RCOG, in 1952. It’s vital this continues.

  • Clinical and research
  • Pregnancy and birth
  • Fertility
  • Abortion
  • Menopause
  • Gynaecology