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White Swan UK Immunology Online Patient & Public Conversations Dataset

Population Size

76,742

People

Population Size statistic card

Years

2023

Years statistic card

Associated BioSamples

None/not available

Associated BioSamples statistic card

Geographic coverage

United Kingdom

Geographic coverage statistic card

Lead time

1-2 months

Lead time statistic card

Summary

The dataset contains anonymised patient and public conversation which has taken place online regarding immunological diseases. An extensive list of conditions have been curated, for example, the largest data samples include asthma, allergies (including hayfever, food, drug and other allergies), polymyalgia rheumatica, HIV, autoimmune thyroiditis, celiac disease, lupus , hives, type 1 diabetes, rheumatoid arthritis, lymphedema, graves, LADA, ulcerative colitis and ankylosing spondylitis.

Documentation

The dataset contains anonymised patient and public conversation which has taken place online regarding immunological diseases. An extensive list of conditions have been curated, for example, the largest data samples include asthma, allergies (including hayfever, food, drug and other allergies), polymyalgia rheumatica, HIV, autoimmune thyroiditis, celiac disease, lupus , hives, type 1 diabetes, rheumatoid arthritis, lymphedema, graves, LADA, ulcerative colitis and ankylosing spondylitis.

Due to immunological involvement in disease being varied, condition parameters can be adjusted in future data collection.

Dataset type

Health and disease, Socioeconomic, Lifestyle, Imaging types, Information and communication, Measurements/Tests, Treatments/Interventions

Dataset sub-type

Immunity, Others, Musculoskeletal, Rare diseases, Metabolic and endocrine, Oral and gastrointestinal, Neurological, Vision, Respiratory

Dataset population size

76742

Associated media

Keywords

Observations

Observed Node

Disambiguating Description

Measured Value

Measured Property

Observation Date

Persons

Persons in this dataset are determined by the unique volume of chosen display names in the data. This is calculated per source (reddit, reviews, other forums), and then totaled together. In other forums and reviews domains persons may choose to denote themselves as anonymous. In this case, anonymous users are counted once per domain. For example, on 'healthunlocked.com/pmrgcauk'.

76742

Unique online names indicating number of persons

01 Feb 2025

Provenance

Purpose of dataset collection

Research cohort

Source of data extraction

Free text NLP

Collection source setting

Other

Image contrast

Not stated

Biological sample availability

None/not available

Structural Metadata

Details

Publishing frequency

Irregular

Version

1.0.0

Modified

13/02/2025

Distribution release date

01/03/2023

Citation Requirements

White Swan is a registered charity in England and Wales (1176486) improving health and wellbeing through AI technology and analytics.

Coverage

Start date

01/02/2023

Time lag

1-2 months

Geographic coverage

United Kingdom

Maximum age range

112

Accessibility

Language

en

Alignment with standardised data models

OTHER, LOCAL

Controlled vocabulary

LOCAL, HPO, OTHER

Format

csv, xlsx, web page explorer

Data Access Request

Dataset pipeline status

Available

Access rights

In Progress

Time to dataset access

1-2 months

Access request cost

On Request

Access method category

Varies based on project

Access service description

On Request

Jurisdiction

UK

Data use limitation

Project-specific restrictions

Data use requirements

Project-specific restrictions

Data Controller

White Swan

Data Processor

White Swan

Dataset Types: Health and disease, Socioeconomic, Lifestyle, Imaging types, Information and communication, Measurements/Tests, Treatments/Interventions

Dataset Sub-types: Immunity, Others, Musculoskeletal, Rare diseases, Metabolic and endocrine, Oral and gastrointestinal, Neurological, Vision, Respiratory


Collection Sources: Other

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