“Asset exchange”—interactions between patient groups and pharmaceutical industry: Australian qualitative study

Abstract

ObjectiveTo understand and report on the nature of patient group interactions with the pharmaceutical industry from the perspective of patient group representatives by exploring the range of attitudes towards pharmaceutical industry sponsorship and how, why, and when interactions occur.DesignEmpirical qualitative interview study informed by ethics theory.SettingAustralian patient groups.Participants27 participants from 23 Australian patient groups that represented diverse levels of financial engagement with the pharmaceutical industry. Groups were focused on general health consumer issues or disease specific topics, and had regional or national jurisdictions.AnalysisAnalytic techniques were informed by grounded theory. Interview transcripts were coded into data driven categories. Findings were organised into new conceptual categories to describe and explain the data, and were supported by quotes.ResultsA range of attitudes towards pharmaceutical industry sponsorship were identified that are presented as four different types of relationship between patient groups and the pharmaceutical industry. The dominant relationship type was of a successful business partnership, and participants described close working relationships with industry personnel. These participants acknowledged a potential for adverse industry influence, but expressed confidence in existing strategies for avoiding industry influence. Other participants described unsatisfactory or undeveloped relationships, and some participants (all from general health consumer groups) presented their groups’ missions as incompatible with the pharmaceutical industry because of fundamentally opposing interests. Participants reported that interactions between their patient group and pharmaceutical companies were more common when companies had new drugs of potential interest to group members. Patient groups that accepted industry funding engaged in exchanges of “assets” with companies. Groups received money, information, and advice in exchange for providing companies with marketing, relationship building opportunities with key opinion leaders, coordinated lobbying with companies about drug access and subsidy, assisting companies with clinical trial recruitment, and enhancing company credibility.ConclusionsAn understanding of the range of views patient groups have about pharmaceutical company sponsorship will be useful for groups that seek to identify and manage any ethical concerns about these relationships. Patient groups that receive pharmaceutical industry money should anticipate they might be asked for specific assets in return. Selective industry funding of groups where active product marketing opportunities exist might skew the patient group sector’s activity towards pharmaceutical industry interests and allow industry to exert proxy influence over advocacy and subsequent health policy.

Five years of pharmaceutical industry funding of patient organisations in Sweden: Cross-sectional study of companies, patient organisations and drugs

“…This study's finding of close relations between patient organisations and pharmaceutical companies is consistent with what has been reported from other countries, including the UK [4,26], United States [13,14,17,28,35], Australia [11,27], Canada [12], Italy [36] and Finland [29]. Between 2014 and 2018, 77 Swedish patient organisations were reported to receive support from 46 companies, involving 1,337 payments with a cumulative value of roughly €6.4m.…”

“…The increasing scope of activity results in patient organisations encountering many challenges in developing their capacity and expertise [1,5]. Some of these challenges may be addressed by funding and other support provided by pharmaceutical companies [6,7,8,9,10,11]. However, partnering with companies also raises concerns about conflicts of interest weakening patient organisations' independence from commercial agendas [4,11,12,13,14,15,16,17,18] that do not always coincide with the interest of patients and public health [19,20].…”

“…Some of these challenges may be addressed by funding and other support provided by pharmaceutical companies [6,7,8,9,10,11]. However, partnering with companies also raises concerns about conflicts of interest weakening patient organisations' independence from commercial agendas [4,11,12,13,14,15,16,17,18] that do not always coincide with the interest of patients and public health [19,20]. For example, several industry-funded patient groups at the European Union level supported the industry's efforts to relax the ban on direct-to-consumer advertising, but this agenda was strongly opposed by patient groups that did not accept industry funding [21].…”

Corporate sponsorship of patient groups

“…In the linked paper (doi:10.1136/bmj.l6925), Fabbri and colleagues provide the first systematic review on this topic to examine the extent of ties between patient groups and industry, the policies of patient groups surrounding corporate sponsorship, and the effect of industry support on the public position statements made by patient groups 2. This builds on a recent qualitative study in The BMJ by Parker and colleagues exploring the attitudes of patient groups towards industry 3…”

“…As Parker and colleagues noted in their previous study, when a patient group does not already exist, companies have been known to establish one, placing carefully selected leaders at the top. In qualitative interviews with patient group staff, the leaders readily acknowledged the “give and take,” transactional nature of corporate sponsorship 3. Patient organizations have been slow to regulate their own conflicts of interest; perhaps these intimate connections explain the holdup.…”