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White Swan UK Immunology Online Patient & Public Conversations Dataset

Population Size

76,742

People

Years

2023

Associated BioSamples

None/not available

Geographic coverage

United Kingdom

Lead time

1-2 months

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
on request

Keywords

Social Data, Online Data, Patient Testimonials, mobility, testing, imaging, diagnosis, risk factors, prevention, testimonials, treatment, immune, immunological, asthma, allergies, hayfever, allergic rhinitis, polymyalgia rheumatica, HIV, autoimmune thyroiditis, celiac disease, lupus, allergic urticaria, diabetes type 1, type 1 diabetes, rheumatoid arthritis, allergy, allergic, lymphedema, graves' disease, ulcerative colitis, ankylosing spondylitis, encephalitis, multiple sclerosis, sjogren's syndrome, temporal arteritis, primary thrombocytopenia, antiphospholipid syndrome, autosomal dominant familial periodic fever, myasthenia gravis, atopic dermatitis, splenic sequestration, Immune system, splenic

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