cinzia colombo, Mario Negri Institute for Pharmacological Research
8 March 2007
As reported in the article “Advertising and disclosure of funding on patient organization websites: a cross sectional survey” the role of patients’ organizations is growing in the healthcare field, as well as their exposure to conflicts of interest. Even so, the concept of “conflict of interest” is unfamiliar to patients’ associations and transparency of fund raising is rarely discussed also in Italy (BMJ. 2003;327(7410):344). This issue is the object of some questions included in an ad hoc survey carried out to review the quality of websites, in the framework of the project “Internet as an instrument to search for information about cancer pain”. A multidisciplinary team* independently assess Italian or English websites dealing with cancer pain included in a 8 categories catalogue created by the Mario Negri Institute (http://www.paincare.it). This project started in 2005 and we are now analyzing the data of 118 websites.Among the 74 associations’ (patients, consumers and medical associations) websites: 14 (19%) declare the websites sponsor in the home page; 49 (66%) don’t declare sponsor other than the owner of the website; 69 (93%) have no advertising, among websites with publicity, 4 (80%) clearly separate the advertisings from other messages, and, finally, 26 (35%) specify the date of update in the websites pages. In details, among the 13 patients’ associations’ websites (8 in Italian language, 5 in English): 3 (23%) declare the website sponsor, 10 (76%) don’t declare sponsor other than the owner of the website; advertisings, clearly separate from other messages, are present in only one website, and, finally, only 5 (38%) specify the date of update.Among the 44 information websites evaluated: 10 (23%) declare the website sponsor in the home page; 21 (48%) don’t declare specific sponsor other than the owner of the website; 32 (73%) have no advertising but among websites with publicity, 2 (17%) clearly separate the advertisings from other messages, finally, 7 (16%) specify the date of update. Our project was not focused on evaluating the transparency of patients’ associations, however we find results similar to Ball et al findings: also in our sample patients associations websites declare sponsors and potential conflicts of interests in a very few cases. A similar picture for the medical scientific societies. As internet is a growing source of information, the research focused on quality of websites should be increased and the results obtained discussed.
*The working group is composed by 16 people between researchers, representatives of patients’ associations, librarians: Cinzia Colombo, Paola Mosconi, Giovanni Apolone, Chiara Bassi, Franco Bernardi, Marco Bosisio, Cinzia Brambilla, Patrizia Copelli, Cristiano Crotti, Annalaura Erroi, Miriam Magri, Chiara Pandolfini, Barbara Pierotti, Vanna Pistotti, Eugenio Santoro, Elena Zucchetti. This study is supported by the foundation "Luogo di Vita e di Incontro" (Lu.V.I. Onlus).
An Italian experience on cancer pain websites
8 March 2007
As reported in the article “Advertising and disclosure of funding on patient organization websites: a cross sectional survey” the role of patients’ organizations is growing in the healthcare field, as well as their exposure to conflicts of interest. Even so, the concept of “conflict of interest” is unfamiliar to patients’ associations and transparency of fund raising is rarely discussed also in Italy (BMJ. 2003;327(7410):344). This issue is the object of some questions included in an ad hoc survey carried out to review the quality of websites, in the framework of the project “Internet as an instrument to search for information about cancer pain”. A multidisciplinary team* independently assess Italian or English websites dealing with cancer pain included in a 8 categories catalogue created by the Mario Negri Institute (http://www.paincare.it). This project started in 2005 and we are now analyzing the data of 118 websites.Among the 74 associations’ (patients, consumers and medical associations) websites: 14 (19%) declare the websites sponsor in the home page; 49 (66%) don’t declare sponsor other than the owner of the website; 69 (93%) have no advertising, among websites with publicity, 4 (80%) clearly separate the advertisings from other messages, and, finally, 26 (35%) specify the date of update in the websites pages. In details, among the 13 patients’ associations’ websites (8 in Italian language, 5 in English): 3 (23%) declare the website sponsor, 10 (76%) don’t declare sponsor other than the owner of the website; advertisings, clearly separate from other messages, are present in only one website, and, finally, only 5 (38%) specify the date of update.Among the 44 information websites evaluated: 10 (23%) declare the website sponsor in the home page; 21 (48%) don’t declare specific sponsor other than the owner of the website; 32 (73%) have no advertising but among websites with publicity, 2 (17%) clearly separate the advertisings from other messages, finally, 7 (16%) specify the date of update. Our project was not focused on evaluating the transparency of patients’ associations, however we find results similar to Ball et al findings: also in our sample patients associations websites declare sponsors and potential conflicts of interests in a very few cases. A similar picture for the medical scientific societies. As internet is a growing source of information, the research focused on quality of websites should be increased and the results obtained discussed.
*The working group is composed by 16 people between researchers, representatives of patients’ associations, librarians: Cinzia Colombo, Paola Mosconi, Giovanni Apolone, Chiara Bassi, Franco Bernardi, Marco Bosisio, Cinzia Brambilla, Patrizia Copelli, Cristiano Crotti, Annalaura Erroi, Miriam Magri, Chiara Pandolfini, Barbara Pierotti, Vanna Pistotti, Eugenio Santoro, Elena Zucchetti. This study is supported by the foundation "Luogo di Vita e di Incontro" (Lu.V.I. Onlus).
Competing interests
I have no conflict of interests