DOI: 10.15125/bath-00904
title: Dataset for "A patient-industry complex? Investigating the financial dependency of UK patient organisations on drug company funding"

description: This digital dataset includes Appendices accompanying the paper entitled ‘A “patient-industry complex”? Investigating the financial dependency of UK patient organisations on drug company funding (2012-2016)’.

The Appendices provide (1) raw data analysed in the paper; (2) background details of data collection and analysis; (3) additional research findings and commentary.

The Appendices draw on data extracted from two sources:

A. Yearly disclosure reports published by 62 UK-based drug companies, on their respective websites, including payments made to patient organisations registered as charities in the UK;
B. Yearly financial accounts produced by 399 UK-based patient organisations and published on charity regulator websites.

The data is divided into Appendices which are signposted throughout the Methods and Findings sections of the above-mentioned article.
description: The methodology used to create this dataset is described comprehensively in the Methods section of the paper entitled "A “patient-industry complex”? Investigating the financial dependency of UK patient organisations on drug company funding (2012-2016)". 

In short, the data collection process had three stages. First, we downloaded disclosure reports detailing the number and value of payments to patient organisations made by a sample of 108 companies participating in the Disclosure UK initiative in 2015 (https://www.abpi.org.uk/our-ethics/disclosure-uk/). The reports covered the 2012-2016 calendar years. Second, we searched for the annual accounts of patient organisations identified in the drug company payment disclosure reports on the websites of the three UK charity regulators, that is the Charity Commission for England and Wales (https://www.gov.uk/government/organisations/charity-commission), the Scottish Charity Regulator (https://www.oscr.org.uk/) and the Charity Commission for Northern Ireland (https://www.charitycommissionni.org.uk/). The reports covered the 2012/3-2016/17 financial years. For patient organisations identified with reports identified on the charity regulator websites we extracted the yearly values of income and expenditure. Third, we collected available online information on the following characteristics of patient organisations identified in the drug company payment disclosure reports: organisational goal; presence of members or volunteers; geographical scope of activity headquarter location within the UK; represented disease area. 

The data from was initially extracted into separate Excel spreadsheets and subsequently combined for the purposes of analysis. 

In total, this online dataset comprises 37 Appendices, providing background details on the data collection, aggregation and analysis as well as additional research results and related commentary.
description: The data was created and prepared for analysis using Excel (primarily "countifs", "sumifs", and "V-lookup" functions).
description: The data is organised into appendices which correspond with specific parts of the Methods and Results section of the paper entitled "A “patient-industry complex”? Investigating the financial dependency of UK patient organisations on drug company funding (2012-2016)".