Data and cohort

Our Future Health data files

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The Our Future Health cohort

The Our Future Health programme is open to all adults (18 years and older) living in the UK. The data we’ve gathered so far includes:

• 1,193,001 participants, who have consented to take part and completed our baseline health questionnaire
• a subset of 330,058 participants who have been successfully genotyped
• a subset of 957,444 participants with at least one record in one or more of the linked health records data sets, which now also include Cancer Registration and Cancer Pathway data sets

In July 2022, we started recruiting participants in England and will continue to expand across the rest of the UK.

Go to the programme design and recruitment documentation

Our aim is to build a data set that reflects the UK population. The following tables show the current composition of our cohort.

Current cohort ages

Participant age	Cohort percentage
18 to 39	23.5%
40 to 59	37.6%
60 to 79	36.8%
80+	2.1%

Current cohort self-reported sex

Participant sex registered at birth	Cohort percentage
Female	57%
Male	42.9%
Other	0.1%

Current cohort ethnicities

Participant ethnicity	Cohort percentage
Asian	5.5%
Black	1.4%
White	90%
Mixed	1.7%
Other	1.4%

View the Characteristics of Our Future Health participants (PDF)

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The available data

The current data available includes:

• participant data - which contains registration, consent and baseline demographic information collected across all consented participants
• questionnaire data - which contains self-reported health information, details about participants' household, socioeconomic status, work and education history and family history
• genotype array data – which contains single nucleotide polymorphism (SNP) data extracted from blood and made available in two different file formats
• linked health records data – which contains health records provided by the National Health Service (NHS) in England and registrations of death from the Office for National Statistics (ONS)

Data sets are stored and accessed in the Our Future Health Trusted Research Environment (TRE).

Participant data

The participant data set includes self-reported demographic information about:

• ethnicity
• gender and sex
• month and year of birth

It also includes information relating to registration and consent:

• month and year of registration with Our Future Health
• month and year of consent to take part in the Our Future Health research programme

This data set is gathered at various times, such as during participant registration and as part of the baseline health questionnaire.

Go to the participant data documentation

Baseline health questionnaire data

There are 2 versions of the baseline health questionnaire. Version 1 of the questionnaire contains 202 questions, and the current version (version 2) contains 286 questions. Version 2 went live in November 2022. Not all participants see every question. Some questions are presented selectively, depending on participant responses.

The questions are grouped into five sections:  

• about you and your household – for example, age, sex, height, weight, ethnicity and living situation
• work and education – for example, income, employment history and highest educational attainment
• lifestyle – for example, socialising, screen use and alcohol intake
• family health history – for example, siblings' and parents' health
• personal health history – for example, health check-ups and screenings, diagnoses, medications and any current symptoms

Go to the baseline health questionnaire data documentation

Genotype data

The first release of our genotype array data was made available in the Our Future Health TRE on 12 December 2023. The current release consists of 700,138 genetic variants across 330,058 participants who have also completed the baseline health questionnaire (152,586 male, 177,472 female).

Data are available in two common file formats, split across 25 chromosomes, with each accompanied by sample level metadata to aid quality control (QC).

Genotype array data:

• Variant Call Format Files (VCF) and associated files
• Binary GEN file format (BGEN) and associated files

Metadata:

• Sample level QC file

Go to the genotype array data documentation

Linked health records data

The first release of our linked health records data was made available in the Our Future Health TRE on 26 June 2024 and included 4 data sets:

• Admitted Patient Care (HES APC) – episodes of care where a participant is admitted at NHS hospitals in England
• Accident and Emergency (HES A&E) – attendances recorded at major A&E departments, single specialty A&E departments, walk-in centres, and minor injury units at NHS hospitals in England
• Outpatient (HES OP) – outpatient appointments at NHS hospitals in England
• ONS Death Registration – death registration (date of death, registrar designation) and mortality data (cause of death, age at death) for England and Wales

In the September 2024 release, we have added two additional data sets of NHS linked health records data from the National Disease Registry Service (NDRS) in England:

• Cancer Registration, which comprises two tables:

  • Cancer Registry Treatment - event-level data with information on treatments received for a given tumour
  • Cancer Registry Patient Tumour - tumour-level data with information on each tumour, including site and diagnosis
• Cancer Pathway - information on the services a participant accessed in their journey from diagnosis to treatment

A Linked Participants table will also now be available alongside any approved linked health record data. This will confirm all participants who have been successfully linked to an NHS number, regardless of whether recorded data are present within a given release.

Linked health records data available

Data set	Number of participants
NHS Admitted Patient Care (HES APC)	661,810
NHS Accident and Emergency (HES A&E)	659,716
NHS Outpatient (HES OP)	864,360
NHS Cancer Registry Treatment	56,056
NHS Cancer Registry Patient Tumour	66,899
NHS Cancer Pathway	39,462
ONS Death Registration	1,068

Go to the linked health records data documentation

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Our data releases

We release new data into our TRE on a quarterly basis as our cohort grows.

For more information on our latest release and what has changed since previous releases, view our data release documentation for Release 8.

Stay up to date

Would you like to stay up to date with our work? Sign up for updates and tell us what you'd like to know.

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Protecting the data

We de-identify all participant data before it’s available for use. All researchers will need to become registered researchers at Our Future Health and have an approved research study before they're given access to the data for research purposes.

As a registered researcher at Our Future Health:

• you must access the data for your research study in accordance with an approved study application
• you must have completed information governance training that covers UK GDPR within the past 12 months
• your organisation must sign our resource terms and conditions

Find out how to apply to access the data.

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Updated: 18 September 2024