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BRIAN App - Patient data; treatments, PROMs, multi-modal data and demographics

Population Size

4,500

People

Population Size statistic card

Years

2019

Years statistic card

Associated BioSamples

None/not available

Associated BioSamples statistic card

Geographic coverage

Not reported
Geographic coverage statistic card

Lead time

Not applicable

Lead time statistic card

Summary

BRIAN is a patient support app created by The Brain Tumour Charity. It currently has approx. 4,500 users who use it to record information about their condition, treatments and medications, track quality of life, and more.

Documentation

Summary of data captured and available for analysis in BRIAN:

Tumour Log

Details of users' condition and how it changes over time.

  • Tumour Type, grade, location, status, date of diagnosis
  • Historical view of changes over time

Demographics (primary)

All BRIAN users provide the following information when signing up to the app.

  • Month / year of birth
  • Month / year of death (where patient is deceased)
  • Sex
  • Country of residence
  • UK County

Demographics (secondary)

These fields are non-mandatory so not as well populated as the primary demographics.

  • Qualifications
  • Job Status
  • Income
  • Marital Status

Treatments & Appointments

Users can use BRIAN to track all of their health visits.

  • Health visit description
  • Start / End dates
  • Number of treatments
  • Radiotherapy dosage info

Medications

BRIAN allows its users to set up a medication schedule and uses mobile notifications to remind users to take them.

  • Schedule: medication types, start/end dates, dosage, and the schedule for taking the medication
  • Reminders: reminder times, and the times logged by users for when they actually took the medication

Wearables

Users can opt in to sharing wearable data with the app. N.B. the quantity data gathered varies by the users’ wearable device.

  • Activity data: steps, distance travelled, active minutes, flights stairs climbed
  • Sleep data: total sleep, light sleep, deep sleep, REM sleep, wake sleep, time in bed
  • Heart data: average, min, max & resting heart rate
  • Height & Weight data: height, weight, BMI

Challenges

These small games / activities were created to capture some unique data points that could be used for analysis.

  • Stability Challenge: users have to hold device one-handed and try to keep a ball in a target using very fine motor movements. Scores over time can be shared.
  • Memory Challenge: users are shown a series of images one after another and are required to indicated whether the current image was the same as the last image. Scores over time can be shared.
  • Speech Challenge: users read aloud a passage of text & the audio is captured. Voice clips & Azure audio analysis data can be shared.
  • Selfie challenge: users take a photo of their face each day. Azure Cognizant analysis can be shared.

Quality of Life

There are two means for users to track quality of life in BRIAN:

  • QoL Check-ins; a regular check in where users record how they’re feeling physically, cognitively & emotionally, and track symptoms they’re experiencing.
  • EORTC-QLQ-C30 + BN20 (Adults) and PEDSQL (Paediatrics)

Clinical Trial History

  • Record of clinical trials attended, as entered by users

Benefits Claimed

  • Record of state benefits patient is claiming, as entered by users

Diet Survey

  • An internally authored survey that gathers information on dietary behaviours in patients.

Dataset type

Health and disease

Dataset sub-type

Not applicable

Dataset population size

4500

Associated media

Keywords

Observations

Observed Node

Disambiguating Description

Measured Value

Measured Property

Observation Date

Persons

4500

N/A

30 Sep 2019

Provenance

Source of data extraction

Other

Collection source setting

Other

Image contrast

Not stated

Biological sample availability

None/not available

Details

Publishing frequency

Continuous

Version

3.0.0

Modified

08/10/2024

Citation Requirements

The Brain Tumour Charity

Coverage

Start date

30/09/2019

Time lag

Variable

Maximum age range

150

Accessibility

Language

en

Controlled vocabulary

OTHER

Format

database, audio

Data Access Request

Dataset pipeline status

Not available

Access rights

Time to dataset access

Not applicable

Jurisdiction

GB-GB

Data use limitation

General research use,Research-specific restrictions

Data use requirements

User-specific restriction

Data Controller

The Brain Tumour Charity

Data Processor

The Brain Tumour Charity

Dataset Types: Health and disease


Collection Sources: Other

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