How do health consumer organisations in Australia manage pharmaceutical industry sponsorship? A cross-sectional study
Edith Lau A , Alice Fabbri A and Barbara Mintzes A BA Charles Perkins Centre and School of Pharmacy, Faculty of Medicine and Health, The University of Sydney, John Hopkins Drive, Camperdown, NSW 2006, Australia. Email: elau5098@uni.sydney.edu.au; alice.fabbri@sydney.edu.au
B Corresponding author. Email: Barbara.mintzes@sydney.edu.au
Australian Health Review 43(4) 474-480 https://doi.org/10.1071/AH17288
Submitted: 19 December 2017 Accepted: 9 May 2018 Published: 19 July 2018
Abstract
Objective The aim of this study was to investigate how health consumer organisations manage their relationships with the pharmaceutical industry in Australia.
Methods We identified 230 health consumer organisations that received pharmaceutical industry support from 2013 to 2016 according to reports published by Medicines Australia, the industry trade association. A random sample of 133 organisations was selected and their websites assessed for financial transparency, policies governing corporate sponsorship and evidence of potential industry influence.
Results In all, 130 of the 133 organisations evaluated received industry funding. Of these 130, 68 (52.3%; 95% confidence interval (CI) 43.4–61.1%) disclosed this funding. Nearly all (67; 98.5%) reported the identity of their industry donors, followed by uses (52.9%), amount (13.2%) and proportion of income from industry (4.4%). Less than one-fifth (24/133; 18.0%; 95% CI 11.9–25.6%) had publicly available policies on corporate sponsorship. Six organisations (7.2%; 95% CI 2.7–15.1%) had board members that were currently or previously employed by pharmaceutical companies, and 49 (36.8%; 95% CI 28.6–45.6%) had company logos, web links or advertisements on their websites.
Conclusion Industry-funded health consumer organisations in Australia have low transparency when reporting industry funding and few have policies governing corporate sponsorship. Relationships between health consumer organisations and the industry require effective actions to minimise the risks of undue influence.
What is known about this topic? Pharmaceutical industry funding of health consumer organisations is common in the US and Europe, yet only a minority of such organisations publicly disclose this funding and have policies regulating their relationships with industry.
What does this paper add? Industry-funded health consumer organisations in Australia have inadequate financial transparency and rarely have policies addressing corporate funding. Organisations that have received more industry funding are more likely to report it publicly.
What are the implications for practitioners? Robust policies addressing corporate sponsorship and increased transparency are needed to maintain the independence of health consumer organisations. Governments may also consider regulating non-profit organisations to ensure public reporting of funding sources.
References
[1] Medicines Australia. Learn about health consumer organisations. 2008. Available at: https://medicinesaustralia.com.au/community/working-together-guide/learn-about-health-consumer-organisations/ [verified 19 December 2017].[2] Rothman SM, Raveis VH, Friedman A, Rothman DJ. Health advocacy organizations and the pharmaceutical industry: an analysis of disclosure practices. Am J Public Health 2011; 101 602–9.
| Health advocacy organizations and the pharmaceutical industry: an analysis of disclosure practices.Crossref | GoogleScholarGoogle Scholar |
[3] Abola MV, Prasad V. Characteristics and conflicts of public speakers at meetings of the oncologic drugs advisory committee to the US food and drug administration. JAMA Intern Med 2016; 176 389–91.
[4] Claypool R, Sehgal A, Knievel S. Patients’ groups and big pharma. Washington, DC: Public Citizen; 2016.
[5] Lin DH, Lucas E, Murimi I, Kolodny A, Alexander GC. Financial conflicts of interest and the Centers for Disease Control and Prevention’s 2016 Guideline for Prescribing Opioids for Chronic Pain. JAMA Intern Med 2017; 177 427–8.
[6] McCoy MS, Carniol M, Chockley K, Urwin JW, Emanuel EJ, Schmidt H. Conflicts of interest for patient-advocacy organizations. N Engl J Med 2017; 376 880–5.
| Conflicts of interest for patient-advocacy organizations.Crossref | GoogleScholarGoogle Scholar |
[7] O’Donovan O. Corporate colonization of health activism? Irish health advocacy organizations’ modes of engagement with pharmaceutical corporations. Int J Health Serv 2007; 37 711–33.
| Corporate colonization of health activism? Irish health advocacy organizations’ modes of engagement with pharmaceutical corporations.Crossref | GoogleScholarGoogle Scholar |
[8] Perehudoff K, Alves TL. Patient and consumer organisations at the European Medicines Agency: financial disclosure and transparency. Contract no. 02-2010/08. Amsterdam: Health Action International (HAI) Europe; 2010.
[9] Rose SL, Highland J, Karafa MT, Joffe S. Patient advocacy organizations, industry funding, and conflicts of interest. JAMA Intern Med 2017; 177 344–50.
[10] Hemminki E, Toiviainen HK, Vuorenkoski L. Co-operation between patient organisations and the drug industry in Finland. Soc Sci Med 2010; 70 1171–5.
| Co-operation between patient organisations and the drug industry in Finland.Crossref | GoogleScholarGoogle Scholar |
[11] García-Sempere A, Artells JJ. Organization, functioning and expectations of organizations representing patients. Survey of key informants. Gac Sanit 2005; 19 120–6.
[12] Abola MV, Prasad V. Industry funding of cancer patient advocacy organizations. Mayo Clin Proc 2016; 91 1668–70.
| Industry funding of cancer patient advocacy organizations.Crossref | GoogleScholarGoogle Scholar |
[13] Ball DE, Tisocki K, Herxheimer A. Advertising and disclosure of funding on patient organisation websites: a cross-sectional survey. BMC Public Health 2006; 6 201
| Advertising and disclosure of funding on patient organisation websites: a cross-sectional survey.Crossref | GoogleScholarGoogle Scholar |
[14] Colombo C, Mosconi P, Villani W, Garattini S.. Patient organizations’ funding from pharmaceutical companies: is disclosure clear, complete and accessible to the public? An Italian survey. PLoS One 2012; 7 e34974
| Patient organizations’ funding from pharmaceutical companies: is disclosure clear, complete and accessible to the public? An Italian survey.Crossref | GoogleScholarGoogle Scholar |
[15] Jones K. In whose interest? Relationships between health consumer groups and the pharmaceutical industry in the UK. Sociol Health Illn 2008; 30 929–43.
| In whose interest? Relationships between health consumer groups and the pharmaceutical industry in the UK.Crossref | GoogleScholarGoogle Scholar |
[16] Medicines Australia. Code of conduct. Edition 16. 2010. Available at: http://main.medaus.com.au/files/2010/09/Code-of-Conduct-Edition-161.pdf [verified 12 April 2018].
[17] Vitry A. Investigating the relationship between health consumer organisations and the pharmaceutical industry in Australia. 2011. Available at: http://www.healthissuescentre.org.au/images/uploads/resources/Relationship-between-consumer-organisations-and-pharmaceutical-industry.pdf [verified 12 April 2018].
[18] Medicines Australia. Health consumer organisation support reports. 2016. Available at: https://medicinesaustralia.com.au/code-of-conduct/transparency-reporting/health-consumer-organisation-support-reports/ [verified 19 December 2017].
[19] Medicines Australia. Working together guide. 2008. Available at: https://medicinesaustralia.com.au/community/working-together-guide/ [verified 19 December 2017].
[20] The Pharmaceutical Journal. Which? calls for independent body for patient information and group support. PJ Online|News. 2003. Available at: https://www.pharmaceutical-journal.com/pj-online-news-which-calls-for-independent-body-for-patient-information-and-group-support/20009236.article [verified 22 June 2018].
[21] Harris PA, Taylor R, Thielke R, Payne J, Gonzalez N, Conde JG. Research electronic data capture (REDCap) – a metadata-driven methodology and workflow process for providing translational research informatics support. J Biomed Inform 2009; 42 377–81.
| Research electronic data capture (REDCap) – a metadata-driven methodology and workflow process for providing translational research informatics support.Crossref | GoogleScholarGoogle Scholar |
[22] Koo TK, Li MY. A guideline of selecting and reporting intraclass correlation coefficients for reliability research. J Chiropr Med 2016; 15 155–63.
| A guideline of selecting and reporting intraclass correlation coefficients for reliability research.Crossref | GoogleScholarGoogle Scholar |
[23] Mosconi P. Industry funding of patients’ support groups: declaration of competing interests is rare in Italian breast cancer associations. BMJ 2003; 327 344
| Industry funding of patients’ support groups: declaration of competing interests is rare in Italian breast cancer associations.Crossref | GoogleScholarGoogle Scholar |
[24] Internal Revenue Services. About Form 990, return of organization exempt from income tax. Available at: https://www.irs.gov/forms-pubs/about-form-990 [verified 19 December 2017].
