Table 1.
Characteristics of studies included in systematic review of industry funding of patient groups
| Study* | Location of study sample | No of patient groups† | Disease focus‡ | Year of data collection | Data collection methods§ | Publication type | Funding source | Author conflicts of interest¶ |
|---|---|---|---|---|---|---|---|---|
| Abola 2016a | US | 68 | Cancer | 2015-16 | Websites | Peer reviewed journal | Not reported | Not reported |
| Abola 2016b | US | 58 | Cancer | 2015 | FDA meeting transcripts | Peer reviewed journal | Not reported | No |
| Anonymous 2003 | UK | 125 | Multiple | Not reported | Websites | Lay press | Non-profit | Not reported |
| Baggott 2005 | UK | 123/186 (66%) | Multiple | 1999 | Questionnaires | Academic book | Government | Not reported |
| Baggott 2014** | UK | 122/312 (39%) | Multiple | 2010 | Questionnaires | Peer reviewed journal | Not reported | Not reported |
| Ball 2006 | Various (US, UK, Australia, Canada and South Africa) | 69 | Multiple | 2005 | Websites | Peer reviewed journal | No funding received | No |
| Claypool 2016 | US | 147 | Multiple | 2016 | Websites (patient groups and pharmaceutical companies), transparency databases | Report | Not reported | Not reported |
| Colombo 2012 | Italy | 157 | Multiple | 2010 | Websites (patient groups and pharmaceutical companies) | Peer reviewed journal | Non-profit | No |
| García-Sempere 2005 | Spain | 21/38 (55%) | Multiple | 2003-04 | Questionnaires | Peer reviewed journal | Government | Not reported |
| Hemminki 2010 | Finland | Questionnaires: 55/85 (65%); websites: 13 | Multiple | 2003 | Questionnaires, websites | Peer reviewed journal | Government | No |
| Jones 2008 | UK | 246 | Multiple | 2007 | Websites (patient groups and pharmaceutical companies) | Peer reviewed journal | Government | Not reported |
| Jørgensen 2004 | Various (Australia, Canada, Denmark, New Zealand, Norway, Sweden, UK, US) | 16 (n=13 advocacy groups; n=3 consumer groups) | Breast cancer | 2002 (websites, funding information); 1998 (pamphlets, some positions) | Websites, follow-up queries to patient groups, patient information pamphlets | Peer reviewed journal | No funding received | No |
| Kopp 2018 | US | 1215 | Multiple | 2015 | Websites (patient groups and pharmaceutical companies), tax records | Report | Non-profit | No |
| Lin 2017 | US | 30; questionnaire: 26/30 (87%) | Multiple | 2016 | Websites, tax records; questionnaires, annual reports | Peer reviewed journal | Not reported | No |
| Marshall 2006 | US | 29 | Multiple | 2006 | Websites, tax records, questionnaires | Lay press | Media (New Scientist) | Not reported |
| McCoy 2017 | US | 104 | Multiple | 2016 | Tax records, websites | Peer reviewed journal | Not reported | Yes |
| Mosconi 2003 | Italy | 67 | Breast cancer | 1998-99 | Questionnaires | Peer reviewed journal | Non-profit | No |
| O’Donovan 2007†† | Ireland | 112/167 (67%) | Multiple | 2004 | Questionnaires | Peer reviewed journal | Non-profit | Not reported |
| Perehudoff 2010 | Europe | 23 | Multiple | 2010 | Websites (patient groups and pharmaceutical companies), Google searches, direct email communication with patient groups | Report | Government and non-profit | No |
| Perehudoff 2011 | Europe | Questionnaire: 12/22 (55%); policy analysis: 14/22 (64%) | Multiple | 2009-10 | Websites (patient groups and pharmaceutical companies), questionnaires, published policies | Report | Government and non-profit | No |
| Pinto 2016 | Australia | 61/114 (54%) | Rare diseases | 2013-14 | Questionnaires | Peer reviewed journal | No funding received | No |
| Rose 2017 | US | 289/439 (66%) | Multiple | 2013-14 | Questionnaires | Peer reviewed journal | Non-profit | Yes |
| Rothman 2011 | US | 161 | Multiple | 2007-09 | Websites, pharmaceutical company’s grant registry | Peer reviewed journal | Non-profit | Not reported |
| Schubert 2006 | Germany | 8 | Multiple | Not reported | Websites, questionnaires and interviews, magazines from patient groups | Report | Not reported | Not reported |
| van Rijn van Alkmade 2005 | The Netherlands | 96/219 (44%) | Multiple | 2004 | Questionnaires, annual reports | Report | Government | Not reported |
| Vitry 2011 | Australia | 135 | Multiple | 2011 | Websites (patient groups and pharmaceutical companies) | Conference presentation | Non-profit | Not reported |
FDA=US Food and Drug Administration.
Study design: all cross sectional.
Number of patient groups included in our analysis; some studies included several samples. Response rate given if applicable.
The term “multiple” for disease focus is used for studies that focused on patient groups that work on a range of clinical areas.
Some studies used several data collection methods (eg, website analyses, questionnaires, interviews); only those used to collect data included in this systematic review are reported. If not further specified, websites and questionnaires refer to patient groups as a data source.
Only with pharmaceutical or device industries.
Baggott 2014 describes two studies, one of which is described in greater detail in Baggott 2005 (see row above); the listing for Baggott 2014 in this table covers only the second study.
A less comprehensive version of the same study conducted in 2005 was also identified.