The conflict of interests of patient groups has been a focal point of research for many years due to the pivotal role that many patient groups play in healthcare assistance, clinical research, access to drugs and health technology assessment discussions. The push for public and patient partnership in healthcare institutions, drug agencies, research institutes, scientific journals, and drug companies makes the issue of conflicts of interests of patient groups even more important.

Our systematic review, published in The BMJ, is the result of a collaboration among research and clinical groups. This topic is under discussion across different settings and world regions. There is already a broad existing evidence base that led us to tackle the issue of conflict of interests from different angles: research agenda and outcomes, [1,2] scientific societies and health professionals, [3,4] and patients’ associations. [5, 6] Around two years ago, we recognised the need to synthetise the studies that assessed the prevalence of funding of patient groups from pharmaceutical and device industries, the transparency of disclosures, and the effect of industry funding on patient groups’ positions. [7] 

Despite the long standing debate on this topic, we found that the 26 eligible studies were quite heterogeneous and mainly limited to high income countries. Only four of them were focused on the effect of drug company sponsorship. This was a limitation of our study and means that we were unable to draw a comprehensive picture of the situation, or define the potential consequences. Nevertheless, we found that receiving funding from drug companies is quite common among the patient groups included in our systematic review. This varied from a few percent of the total budget to almost the entire budget. Only around a third of industry funded groups included disclosure information on funding. The lack of information on funding makes it harder for some groups to be accountable. People who want to join a patient group should have access to information about a groups’ sources of funding so that they can make an informed decision. 

A key issue was picked up by the patient representatives who reviewed our study. They commented that patient groups have varied expertise in managing their relationships with sponsors. However, patient groups need funding, and public funding is scarce.  

Acknowledging these points, we think it could be useful for patient groups to debate the possible consequences of the sources of funding of their activities and decisions, to share expertise on this, and to take advantage from the practices and codes of disclosures of other stakeholders. The few studies which examine funding status versus a patient group’s position show that groups sponsored by industry tend to have positions favourable to the sponsor, similarly to what happens elsewhere in the healthcare sector. [1] High quality and extensive research referring to multiple sources of information is needed to better know the prevalence of industry funding and the effects of sponsorship.

We are keen to foster independent patient groups that follow transparent and accountable practices and codes on funding. We are aware that the right circumstances are needed to help support patient groups to achieve this aim. For example, we need to explore funding mechanisms for public financing, or the provision of grants to groups without industry sponsorship. This will help include independent groups in policy decisions and support their advocacy actions.

 

Cinzia Colombo, Laboratory for medical research and consumer involvement, Public Health Department, Istituto di Ricerche Farmacologiche Mario Negri IRCCS, Milano

 

 

 

Paola Mosconi, Laboratory for medical research and consumer involvement, Public Health Department, Istituto di Ricerche Farmacologiche Mario Negri IRCCS, Milano

Competing interests: None declared.

 

 

References: 

1. Lundh A, Lexchin J, Mintzes B, et al. Industry sponsorship and research outcome: systematic review with meta-analysis. Intensive Care Med 2018; 44:1603–1612 doi.org/10.1007/s00134-018-5293-7.
2. Fabbri A, Lai A, Grundy Q, et al. The influence of industry sponsorship on the research agenda: A scoping review. Am J Public Health 2018;108(11): e9-e16. doi: 10.2105/AJPH.2018.304677.
3. Vercellini P,Viganò P, Frattaruolo MP, et al. Proliferation of gynaecological scientific societies and their financial transparency: an Italian survey. BMJ Open 2016; 6:e008370. doi:10.1136/bmjopen-2015-008370.
4. Fabbri A, Gregoraci G, Tedesco D, et al. Conflict of interest between professional medical societies and industry: a cross-sectional study of Italian medical societies’ websites. BMJ Open 2016; 6: e011124. doi: 10.1136/bmjopen-2016-011124.
5. Colombo C, Mosconi P, Villani W, et al. Patient organizations’ funding from pharmaceutical companies: Is disclosure clear, complete and accessible to the public? An Italian Survey. PLoS ONE 2012; 7(5): e34974. doi:10.1371/journal.pone.0034974.
6. Fabbri A, Swandari S, Lau E, et al. Pharmaceutical industry funding of health consumer groups in Australia: A cross-sectional analysis. Int J Health Services 2019; 49(2): 273-293. doi: 10.1177/0020731418823376.
7. Mintzes B, Fabbri A, Lau E, et al. Industry funding of patient and consumer organisations: a systematic review. PROSPERO 2017 CRD42017079265 https://www.crd.york.ac.uk/prospero/display_record.php?ID=CRD42017079265.