Elsevier

Social Science & Medicine

Volume 70, Issue 8, April 2010, Pages 1171-1175
Social Science & Medicine

Co-operation between patient organisations and the drug industry in Finland

https://doi.org/10.1016/j.socscimed.2010.01.005Get rights and content

Abstract

The aim of the study was to investigate the co-operation between patient organizations and the drug industry in Finland prior to critical discussions on the topic. The data were gathered by a questionnaire survey of 85 patient organisations (response rate 65%, n = 55) and 20 drug firms (response rate 100%) in 2003, and by interviewing 13 organisations and surveying their web-pages and other documents in 2004. In the surveys, half of the patient organisations and 80% of the drug firms considered co-operation important. Most (71%) organisations reported financial support from the drug industry. Most organisations and drug firms had experienced problems. Common problems for organisations were too little or too unpredictable support from industry, and threats to independence and objectivity. Drug firms frequently mentioned unclear rules of co-operation. The patient organisation interviews exhibited similar themes and findings to those found in the surveys, revealing the complexity and importance of co-operation in organisation activities, and the variation between organisations. This case study from Finland showed that co-operation between patient organizations and the drug industry was common, many-sided and not usually transparent. The close connections between patient organizations and commercial companies, particularly drug firms, raise several policy issues and the need for action.

Introduction

The relationship between patient organizations and the drug industry is currently being debated, largely with a critical tone (Angell, 2004, Ball et al., 2006, Day, 2006, HAI, 2005, Herxheimer, 2003, Hirst, 2003, House of Commons, 2005, Jones, 2008, Mintzes, 2007, Mosconi, 2003, O'Donovan, 2007, Traulsen and Almarsdottir, 2005). As part of a larger study on patient participation in treatment decisions (Toiviainen, 2007, Toiviainen et al., in press), we collected data on the patient organizations' and drug firms' opinions on their relationship. As this was done in 2003–2004, before the beginning of the critical discussion in Finland, the situation can be reviewed at a time when it was still neutral, and the replies given would likely be more honest than would be the case today. In this article we report economic and other interactions between patient organizations and the drug industry.

In spite of the debate, very little empirical research exists on the relationship between patient organizations and the drug industry (Baggot et al., 2005, Ball et al., 2006, Jones, 2008, O'Donovan, 2007, Wood, 2000). An Irish study (O'Donovan, 2007) found a great diversity and variation in patient (health advocacy) organizations' modes of engagement with the pharmaceutical industry. Of the organizations surveyed (112 out of 167 responded) about half had received funding or other support from drug firms, though some of these nevertheless wanted to keep a clear distance from the industry. O'Donovan's later research showed that European patient organizations tend to be reliant on pharmaceutical industry sponsorship. A UK study reported common contacts with and funding from the drug industry, as well as patient organizations' ambivalence about these connections (Baggot et al., 2005). Ball et al.'s (2006) survey of patient organization web-pages in some English-speaking countries showed frequent drug firm (corporate) advertising, but not enough information was available to assess whether a conflict of interest exists.

For Finland's population of 5.2 million, there are about 130 nationwide disease-related patient organizations that concentrate on specific diseases or disabilities, with sufferers or their families as members (Toiviainen, 2007, Toiviainen et al., in press). Many patient organizations are financially supported by Finland's Slot Machine Association, RAY, which is a public agency that receives its income from its monopoly on gambling. Non-profit associations and foundations that aim to improve health and social welfare among Finns can apply for funding from RAY. The money allocated to health foundations, most of which are patient organizations as defined in this study, totalled EUR 95 million in 2002 and EUR 106 million in 2009.

In Finland the promotion of prescription medicines is regulated by legislation and the industry's own code of ethics. Promoting prescription medicines to lay-people is not permitted by law. Since 2004, the law stipulates fines for those who break it (although to date, none have been imposed). The industry's own control mechanism regularly imposes fines. The ethical code of Pharma Industry Finland (the drug industry association) was renewed in 2008 and only then was a separate section on the co-operation between the pharmaceutical industry and patient organizations included in the code.

Section snippets

Materials and methods

The data sources for this study were: a questionnaire survey sent to patient organizations and drug firms, interviews, and web-pages of patient organizations, as well as the electronic files of RAY.

In October 2003, the news department of a commercial TV-company (MTV3-Finland) carried out an e-mail survey using a one-paged structured questionnaire sent to 85 patient organizations and 20 drug firms. The survey constituted investigative journalism and the aim was to study the co-operation between

Questionnaire surveys

The oldest of the 55 patient organizations included in the questionnaire survey had been established in 1897 and the newest in 2002. The median year for establishment was 1977. The size varied widely, as measured by the number of salaried staff, number of individual members, or budget (Table 1). Also the RAY-funding (most important government support) varied greatly. Of the 55 organizations for which information on RAY-funding was available (n = 46), 67% had received it. On average the funding

Discussion

This case study from Finland showed that co-operation between patient organizations and the drug industry was common, many-sided and not without problems. Drug firms financially supported patient organizations, while many patient organizations considered industry support necessary to their income. The drug firms considered the co-operation with patient organizations as useful to their marketing. Problems reported by the patient organizations included threats to independence and the

Acknowledgements

We thank all the interviewed patient organizations and MTV–Finland/News for co-operation, and Tiina Kosonen and Pirkko Helenius for technical support. The research was financially supported by the Ministry of Education (The National Post Graduate School in Social and Health Policy, Management and Economics; and Doctoral Programmes in Public Health) and STAKES (now THL). There are no conflicts of interest.

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