Objectives To study how patient groups that accept pharmaceutical industry money perceive and manage the risk of undue influence from their sponsors.
Design Empirical ethics approach using a qualitative interview study.
Setting The Australian patient group sector.
Participants 27 participants from 23 patient groups, purposively recruited for diversity of group characteristics (degree of pharmaceutical industry funding, health focus, location) and participant role (staff, board members).
Analysis Interview data were transcribed and read repeatedly to identify concepts and patterns in the data. These were grouped into conceptual categories that described and explained the findings. We used an inductive analytical approach to identify important themes and concepts in the data.
Results Participants in this study described how the patient group sector receives pressure from pharmaceutical company funders to act in ways that prioritise company interests. Groups worked to try and protect their credibility and ability to act in ways of their own choosing using practical rules or ‘lines in the sand’ about industry funding activities. They were grouped around the dominant topics of: sponsor exclusivity, brand marketing, agenda setting, advocacy and content of group activities. Lines in the sand were largely experience-driven and ethically informed; they varied between groups. There was also variable transparency among groups about financial interactions with pharmaceutical companies.
Conclusions It is important to know about patient group practices around pharmaceutical industry funders as this allows public scrutiny about the adequacy of such practices. Inadequate strategies may mean that funders can influence patient groups activities in ways that do not necessarily prioritise the interests of members. We found that groups differed in their approach, with little independent external guidance to inform responses to commonly encountered types of influence. Inadequate transparency limits the ability of the public to make informed assessments about the risk of bias over the activities of groups that accept industry funding.
- qualitative research
- ethics (see medical ethics)
- medical ethics
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Contributors LP designed the study, collected the data, participated in the analysis and wrote the first and subsequent drafts of the manuscript. AF, QG, BM and LB participated in the design, data analysis and commented on all drafts, including reading and approving the final manuscript. The corresponding author attests that all listed authors meet authorship criteria and that no others meeting the criteria have been omitted. LP is the guarantor.
Funding No specific funding was received for this study. QG was supported by a postdoctoral fellowship from the Canadian Institutes of Health Research. AF was supported as a post-doctoral fellow by the National Health and Medical Research Council of Australia (NHMRC), project grant no.1122332.
Competing interests All authors have completed the ICMJE uniform disclosure form at www.icmje.org/coi_disclosure.pdf and declare: no support from any organisation for the submitted work; no financial relationships with any organisations that might have an interest in the submitted work in the previous three years. BM is a member of the European network of Health Action International (HAI-Europe). All other authors declare no other relationships or activities that could appear to have influenced the submitted work.
Patient consent for publication Not required.
Ethics approval The study was approved by The University of Sydney Human Research Ethics Committee (project number 2017/758).
Provenance and peer review Not commissioned; externally peer reviewed.
Data availability statement Data are available in a public, open access repository. The database of publicly declared industry payments to patient groups is available at: https://researchdata.ands.org.au/pharmaceutical-industry-funding-december-2016/1330638https://researchdata.ands.org.au/pharmaceutical-industry-funding-december-2016/1330638.
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