ABSTRACT
Objectives
To analyse the extent and patterns of pharmaceutical industry funding of patient groups in Australia between 2013 and 2022, including the proportion of groups' income derived from industry payments in 2022.
Study Type
Longitudinal observational study.
Setting, Participants
Australia, 1 January 2013–31 December 2022. Public disclosures of payments to patient groups from pharmaceutical companies who were members of Medicines Australia (the trade organisation for the prescription pharmaceutical industry in Australia) between 2013 and 2022 and from non‐member companies with at least five registered prescription products in Australia.
Main Outcome Measures
Value (in Australian dollars) of reported payments to patient groups from the pharmaceutical industry and trends in payments by clinical area and over time. For patient groups that received industry funding in 2022, we also examined how this compared with their total income for that year.
Results
Between 2013 and 2022, 45 pharmaceutical companies disclosed $95.7 million in funding to 390 patient groups. Funding was highly skewed, with 13 groups receiving 47.9% ($45,856,940/$95,724,493) of the total payments. The median funding over the decade was $34,374 (interquartile range [IQR], $8228–$122,898) per group. The total reported payments decreased by $293,246 (95% confidence interval, $125,489–$461,006) per year, but some clinical areas, such as oncology, saw an increase. For groups that received funding in 2022, the median proportion of income derived from industry was 2.2% (IQR, 0.3%–9.3%) and nine groups had over half their income from industry.
Conclusions
Industry funding of patient groups was widespread but skewed towards a small subset of groups and clinical areas. This may shift the focus of advocacy efforts towards certain conditions that align with current industry interests. Although further research is still needed on links between funding and patient group priorities, current disclosure measures may be insufficient to manage risks and access to other funding sources and additional safeguards may be needed to maintain independence.
Keywords: advertising as topic, drug industry, financial management, health policy, medical economics, social determinants of health
Plain Language Summary
The known: Interactions between the pharmaceutical industry and patient groups are widespread and funding has been associated with positions favourable to sponsors' interests.
The new: Funding of patient groups decreased from 2013 to 2022; however, it still comprises a large source of income for patient groups. Funding was unevenly distributed, with 13/390 groups (3.3%) receiving 47.9% ($45,856,940/$95,724,493) of the funding. In 2022, nine groups received over half their income from industry.
The implications: Current self‐regulatory disclosure requirements are likely insufficient for managing risks associated with these relationships. Access to other sources of funding and safeguards may be needed to maintain independence.
1. Introduction
Patient groups and health consumer organisations (hereafter called ‘patient groups’) have an important role in research, policy and support for patients and carers. Their role has increased with a greater understanding of the value and importance of consumer input in public health and policy decisions. For medicines, this input can span involvement in the planning of clinical trials through to engaging in the medicine reimbursement process [1, 2].
Patient groups are heterogenous, varying in scope from disease‐specific groups to more general patient advocacy; and size varies from a handful of patients and carers to large, structured organisations funding research and providing health services. Regardless of variation, they require funding to operate and studies in several countries have found high levels of, and dependence on, pharmaceutical industry funding [3, 4, 5, 6, 7, 8, 9]. Although industry funding may be a benefit to patient groups, enabling important support activities, payments from the pharmaceutical industry can also create a sense of reciprocity and influence the direction of advocacy efforts [10, 11]. When funding is targeted towards certain groups with industry‐friendly interests and/or representing a condition treated by funders' products, it can also amplify these voices, increasing advocacy for commercially viable conditions [3].
Medicines Australia, the trade organisation for the prescription pharmaceutical industry in Australia, has required some form of transparency of member company interactions with patient groups since 2009 [12]. Initially, companies were only required to list groups that they supported on their website, but this was expanded in 2013 to require disclosure of any financial or non‐financial support provided [13]. A previous study examined payment disclosures between 2013 and 2016, finding widespread interactions between the pharmaceutical industry and patient groups over the period [14]. However, payments made since 2016 have not yet been examined, neither has there been a comparison between these payments and the total income of patient groups in Australia.
2. Methods
We conducted a longitudinal analysis of disclosed payments from the pharmaceutical industry to patient groups in Australia. This study has been reported as per the STROBE checklist for observational studies (Section S1) [15].
2.1. Data Collection
We downloaded 290 annual disclosure reports from the Medicines Australia website over a 10‐year period from 2013 to 2022, inclusive [16]. These reports are only required for Medicines Australia member companies, so we also identified any non‐member companies with five or more prescription products on the Australian Register of Therapeutic Goods [17] and searched their websites for payment disclosures. For companies that published disclosures on their website, we used the Internet Archive's Wayback Machine to check older versions of the website for previous years' reports. Disclosures were converted from pdf to xlsx format and combined into a searchable database by patient group and sponsor [18]. Pharmaceutical company mergers or acquisitions were treated as separate companies as were subsidiaries and their parent company (Table S1).
Patient groups in the database were cross‐referenced with entries in the Australian Charities and Not‐for‐profits Commission (ACNC) Charity Register [19]. The ACNC is the national regulator for the charities and nonprofit sector, and the Charity Register contains names, details and financial reports for registered charities. Discrepancies in patient group names, either through errors in the original reports, or name‐changes over the decade were resolved using the groups' websites and the ACNC Charity Register. An internet search was conducted for patient groups that did not appear in the Charity Register and group names were matched to their website where possible. Patient groups were also classified by their clinical area, with organisations in the disclosure reports that would not routinely be considered as patient groups (such as universities or health services) classified as ‘miscellaneous’. Methods for the development of this database are further described by Fabbri et al. [14] and in notes provided with the full database [18].
For groups that received funding from the pharmaceutical industry in 2022, we collected information on their gross income and the size of the group from the ACNC Charity Register, which classifies charities as small, medium or large based on their annual revenue [19]. Charities report their income by financial year (July–June), whereas the Medicines Australia reports are by calendar year (January–December). To align the different reporting periods, we estimated groups' income in 2022 by taking the average of the 2021–2022 and 2022–2023 financial reports. Some charities that are state or local branches of larger charities report their finances together to the ACNC (e.g., Diabetes Australia and some of the state‐based diabetes associations report together as the ‘Diabetes Australia_ACNC Group’). To assess industry funding versus annual income, payments to these charities were combined.
2.2. Analysis
Payments have been reported in Australian dollars (AUD) and adjusted for inflation to the 2022 value using the Reserve Bank of Australia's inflation calculator [20]. Analyses were performed using Microsoft Excel and jamovi (version 2.6), which is a statistical software based on R code [21].
Descriptive statistics were presented (median, interquartile range [IQR]) for the overview of income from pharmaceutical industry payments, gross income and proportion of total income from the pharmaceutical industry. We focused on total value of payments per year (rather than number or value of individual payments) as companies differed in their reporting practices; some separated sponsorship of different activities into separate payments while others grouped these together. Simple linear regression was used to investigate if there was a trend in the total value of these payments over time, and R 2 and slope with 95% confidence interval (CI) were reported. Correlations between the year and value of payment disclosures for each clinical area were examined using linear regressions with the R 2 reported. The Kruskal–Wallis H test was used to compare medians between groups.
As ‘miscellaneous’ groups were retained in the data, we conducted a sensitivity analysis, excluding payments to these groups to investigate if this had an impact on the findings.
2.3. Ethics Statement
This study used only publicly available data; therefore, ethics approval was not required.
3. Results
Between 2013 and 2022, $80,208,627 of pharmaceutical industry payments to patient groups were disclosed via the Medicines Australia sponsorship reports [16]. An additional $4,274,695 of payment disclosures were identified on pharmaceutical company websites [22, 23, 24, 25, 26, 27, 28]. When adjusted for inflation, the total value of payments over this period is equivalent to $95,724,493 in 2022 value [20]. In total, 45 companies disclosed payments to 390 patient groups (Table 1), but less than half (42%; 19/45) of the companies reported payments for all 10 years (Table S1). These payments were highly skewed, with 47.9% ($45,856,940/$95,724,493) going to the 13 patient groups that received at least 2% ($1,914,490/$95,724,493) of the total disclosed payments (Figure 1). The median funding over the 10 years was $34,374 (IQR, $8228–$122,898) per patient group (Table 1).
TABLE 1.
Overview of payments to patient groups.
| Number of patient groups | Number of pharmaceutical companies | Number of payments | Total value of payments, AUD$ (%) | Median (IQR) value per patient group, AUD$ | |
|---|---|---|---|---|---|
| Total | 390 | 45 | 3552 | 95,724,493 |
34,374 (8228–122,898) |
| Clinical areas | |||||
| Cancer | 73 | 24 | 1001 |
24,399,184 (25.5%) |
20,000 (10,455–107,805) |
| Musculoskeletal | 15 | 17 | 273 |
9,172,650 (9.6%) |
74,542 (19,444–233,322) |
| Rare genetic disorders | 41 | 26 | 376 |
7,402,620 (7.7%) |
32,237 (8220–167,690) |
| Eye health | 6 | 9 | 58 |
7,190,879 (7.5%) |
101,610 (76,238–238,473) |
| Respiratory system | 7 | 19 | 178 |
7,185,974 (7.5%) |
107,500 (16,605–1,109,832) |
| Nervous system (except epilepsy) | 31 | 18 | 311 |
5,124,895 (5.4%) |
20,994 (4106–79,589) |
| HIV/AIDS | 23 | 7 | 171 |
5,056,835 (5.3%) |
73,800 (39,889–134,875) |
| Diabetes | 11 | 13 | 124 |
3,573,884 (3.7%) |
80,832 (17,385–282,549) |
| Cardiovascular disease | 20 | 17 | 124 |
3,146,307 (3.3%) |
41,893 (16,455–97,686) |
| Kidney disease | 5 | 12 | 62 |
2,909,515 (3.0%) |
42,693 (6150–107,785) |
| Gastrointestinal diseases | 8 | 11 | 117 |
2,867,948 (3.0%) |
21,940 (14,210–34,074) |
| Liver disease | 10 | 10 | 102 |
2,735,971 (2.9%) |
69,439 (15,615–272,678) |
| Patient advocacy, general | 13 | 20 | 107 |
2,147,238 (2.2%) |
28,025 (5000–211,604) |
| Pain | 6 | 3 | 47 |
2,082,579 (2.2%) |
251,329 (116,154–422,919) |
| Mental and behavioural disorders | 19 | 13 | 101 |
2,057,009 (2.2%) |
58,087 (5625–102,446) |
| Blood disorders | 9 | 13 | 74 |
1,914,006 (2.0%) |
30,750 (6600–100,350) |
| Infectious diseases (except HIV/AIDS and hepatitis) | 8 | 5 | 37 |
1,283,820 (1.3%) |
63,323 (5100–183,125) |
| Epilepsy | 9 | 3 | 85 |
1,021,006 (1.1%) |
30,334 (1603–64,263) |
| Skin disorders | 6 | 9 | 39 |
925,303 (0.97%) |
123,526 (41,255–151,818) |
| Carers | 2 | 5 | 14 |
648,247 (0.68%) |
324,124 (187,824–460,423) |
| Allergy and anaphylaxis | 1 | 5 | 17 |
427,462 (0.45%) |
427,462 |
| Harm reduction/drug use | 9 | 5 | 23 |
402,318 (0.42%) |
21,620 (14,922–90,602) |
| Infertility | 3 | 1 | 10 |
289,065 (0.30%) |
20,454 (13,159–141,601) |
| Organ donation and transplantation | 5 | 3 | 13 |
266,685 (0.28%) |
6600 (1145–10,000) |
| Men's health | 4 | 4 | 12 |
249,812 (0.26%) |
44,339 (25,832–80,960) |
| Women's health | 2 | 3 | 5 |
168,961 (0.18%) |
84,481 (71,727–97,234) |
| Children's health | 12 | 9 | 16 |
98,319 (0.10%) |
2138 (0–10,995) |
| Autoimmune disorders | 7 | 4 | 13 |
96,702 (0.10%) |
8588 (4979–19,608) |
| Disability | 2 | 2 | 8 |
54,660 (0.06%) |
27,330 (22,695–31,965) |
| Obesity | 1 | 1 | 2 |
44,600 (0.05%) |
44,600 |
| Thyroid disorders | 1 | 2 | 4 |
38,580 (0.04%) |
38,580 |
| Palliative care | 2 | 1 | 2 |
10,069 (0.01%) |
5035 (3008–7061) |
| Miscellaneous a | 19 | 12 | 26 |
731,389 (0.76%) |
15,810 (9500–40,301) |
Abbreviations: AIDS, acquired immunodeficiency syndrome; AUD, Australian dollars; HIV, human immunodeficiency virus; IQR, interquartile range.
Payments listed by companies as patient/health consumer group payments but targeted to organisations that would not routinely be considered to be patient groups, including universities, hospitals and health services.
FIGURE 1.
Value of funding (values are given in Australian Dollars) to (a) each patient group that received at least 2% ($1,914,490/$95,724,493) of the total disclosed payments between 2013 and 2022 and (b) the sum of the funding to these groups and to all other patient groups. HIV, human immunodeficiency virus; MS, multiple sclerosis.
Cancer patient groups received the most industry funding; however, it was distributed broadly as there were more cancer groups compared with other clinical areas. When split between all the patient groups, each cancer group received a median $20,000 (IQR, $10,455–$107,805) compared with patient groups in the next five clinical areas by total funding received, with each group receiving a median $41,772 (IQR, $7755–$171,208; Table 1).
3.1. Shifts in Payments Over Time
Over the decade, trends in payments changed. The total amount of reported payments decreased by $293,246 per year (95% CI, $125,486–$461,006; Figure 2). Excluding payments to miscellaneous patient groups had minimal impact on the trend (Figure S1). Some clinical areas saw an increase in reported payments, including cancer, which was the top funded clinical area throughout most of the period (Figure 3). There was a decrease in payments to cancer patient groups between 2018 and 2020, but this increased again in 2021.
FIGURE 2.
Scatter plot of total value of payments per year (adjusted for inflation to 2022 AUD value) with linear trendline. AUD, Australian dollar; CI, confidence interval. R 2 = 67%, p = 0.004, β = −293,246 (95% CI, −461,006 to −125,489).
FIGURE 3.
Scatter plot of payments per year (adjusted for inflation to 2022 value) for the top five clinical areas by the total value of their payments. AUD, Australian dollar.
Payments to most clinical areas did not have a linear trend over time (Figure S2). For example, there was an increase in payments to musculoskeletal patient groups over the first half of the period, peaking at $1.5 million in 2018, before decreasing again down to $314,316 in 2022, which was about the same value as payments reported in 2013 (Figure 3). Likewise, there was a peak in payments to eye health patient groups in 2014 of $2.4 million, which decreased substantially, averaging $326,000 per year between 2016 and 2022. For other clinical areas, there was poor correlation between the year and the total value of payment, with the year accounting for less than 1% of the variation in payments to respiratory, diabetes, human immunodeficiency virus/acquired immunodeficiency syndrome (HIV/AIDS) and kidney disease patient groups (Figure S2).
3.2. Proportion of Income From Industry in 2022
The median proportion of patient groups' gross income from pharmaceutical industry disclosed payments in 2022 was 2.2% (IQR, 0.3%–9.3%). The proportion of income from the pharmaceutical industry varied by the size of the patient group, based on the ACNC categories of small, medium and large (H = 67.5; p < 0.001; Figure 4). Small patient groups received a greater proportion of their income from these payments (median, 13.2%; IQR, 5.4%–38.7%) than medium or large groups (median, 2.5% [IQR, 1.2%–6.0%] and 0.1% [IQR, 0.0004%–0.4%] respectively). Notably, nine patient groups received more than 50% of their income from the pharmaceutical industry, including two groups with over 90% of their income from industry (Table S2).
FIGURE 4.
Distribution of the proportion of total patient group income derived from pharmaceutical industry payments by the size of the patient group (for the 2022 calendar year). Lower and upper box borders represent the first and third quartile value, and middle horizontal lines indicate the median. Whiskers indicate the lower and upper values (excluding outliers with values more than 1.5xIQR greater than the third quartile value) and the x is the mean value. IQR, interquartile range.
3.3. Medicines Australia Members Versus Non‐Member Companies
Ten of the 45 pharmaceutical companies (22%) contributed 65% ($61,930,791/$95,724,493) of the payments (Table 2). The number of patient groups to which each company made payments varied, as did the value of payments. For the 23 companies that made at least $1 million in payments, this varied between 5 and 77 patient groups, and each company spent a median of between $9178 (IQR, $1351–$65,580) and $208,495 (IQR, $60,750–$652,545) per group.
TABLE 2.
Pharmaceutical companies providing over $1 million in payments to patient groups.
| Number of patient groups | Total value of payments, AUD$ (%) | Median (IQR) value per patient group, AUD$ | |
|---|---|---|---|
| Total | 390 | 95,724,493 |
34,374 (8228–122,898) |
| Pharmaceutical company | |||
| Janssen | 44 |
8,853,193 (9.3%) |
38,773 (7168–112,194) |
| Amgen | 31 |
8,030,120 (8.4%) |
37,310 (20,476–104,337) |
| Novartis | 71 |
7,154,477 (7.5%) |
34,120 (11,501–78,743) |
| Pfizer | 77 |
7,113,279 (7.4%) |
30,990 (8910–81,680) |
| Sanofi | 50 |
6,911,329 (7.2%) |
44,529 (19,116–146,149) |
| AstraZeneca | 52 |
6,705,959 (7.0%) |
35,204 (8750–107,431) |
| Bayer | 28 |
6,467,053 (6.8%) |
19,915 (9713–196,707) |
| Boehringer Ingelheim | 37 |
3,673,448 (3.8%) |
10,000 (1860–30,000) |
| ViiV Healthcare | 24 |
3,608,853 (3.8%) |
58,114 (21,700–94,644) |
| Roche | 65 |
3,413,081 (3.6%) |
9178 (1351–65,580) |
| Bristol‐Myers Squibb | 38 |
3,409,070 (3.6%) |
42,473 (8262–81,778) |
| AbbVie/Abbott | 70 |
3,271,318 (3.4%) |
14,610 (5753–38,403) |
| GlaxoSmithKline | 34 |
2,917,531 (3.1%) |
41,321 (22,944–75,000) |
| Gilead | 27 |
2,544,686 (2.7%) |
40,552 (12,646–76,393) |
| MSD | 29 |
2,307,139 (2.4%) |
27,792 (10,660–69,200) |
| UCB | 23 |
1,755,495 (1.8%) |
13,978 (4615–45,377) |
| Celgene | 5 |
1,745,263 (1.8%) |
208,495 (60,750–652,545) |
| Seqirus/bioCSL | 12 |
1,718,598 (1.8%) |
59,479 (5576–323,471) |
| Eli Lilly | 23 |
1,610,637 (1.7%) |
36,900 (14,345–98,498) |
| Shire | 19 |
1,570,946 (1.6%) |
24,600 (14,848–92,590) |
| Biogen | 16 |
1,318,063 (1.4%) |
24,646 (6003–79,734) |
| Merck Serono | 26 |
1,110,440 (1.2%) |
15,885 (7597–33,010) |
| Ipsen | 10 |
1,001,824 (1.1%) |
20,390 (3054–154,630) |
Abbreviations: AIDS, acquired immunodeficiency syndrome; AUD, Australian dollars; HIV, human immunodeficiency virus; IQR, interquartile range.
Seven pharmaceutical companies published disclosure reports on their website rather than through Medicines Australia because they were not Medicines Australia members at the time. These companies contributed 4.9% ($4,728,179/$95,724,493) of the total disclosed payments (Table 3), most of which came from ViiV Healthcare (Table 2). Two of these companies have been members of Medicines Australia at some point: until 2018, Seqirus had reported on Medicines Australia, moving the annual disclosure to their own website from 2019 onwards [16, 27], and Kyowa Kirin first reported on Medicines Australia in 2024 with earlier reports on their website [16, 26]. Four non‐member companies only reported payments in 3 or fewer years; however, given these disclosures were voluntary, it is impossible to know if this is because they only made payments in those years.
TABLE 3.
Payments by source of the disclosure reports.
| Value by source of disclosure reports, AUD | Total value, AUD | Proportion of payments from pharmaceutical company website disclosures | ||
|---|---|---|---|---|
| Pharmaceutical company website | Medicines Australia website | |||
| Total | 4,728,179 | 90,996,314 | 95,724,493 | 4.9% |
| Clinical areas a | ||||
| Cancer | 50,000 | 24,349,184 | 24,399,184 | 0.20% |
| Musculoskeletal | 45,800 | 9,126,850 | 9,172,650 | 0.50% |
| Rare genetic disorders | 69,948 | 7,332,672 | 7,402,620 | 0.94% |
| Respiratory | 68,700 | 7,117,274 | 7,185,974 | 0.96% |
| Nervous system | 132,688 | 4,992,207 | 5,124,895 | 2.6% |
| HIV/AIDS | 3,606,553 | 1,450,283 | 5,056,836 | 71.3% |
| Pain | 33,666 | 2,048,913 | 2,082,579 | 1.62% |
| Harm reduction/drug use | 340,578 | 61,740 | 402,318 | 84.7% |
| Miscellaneous b | 380,247 | 351,141 | 731,389 | 52.0% |
Abbreviations: AIDS, acquired immunodeficiency syndrome; AUD, Australian dollars; HIV, human immunodeficiency virus.
Clinical areas have been included if there were payments from both sources of disclosure report.
Payments listed by companies as patient/health consumer group payments but targeted to organisations that would not routinely be considered to be patient groups, including universities, hospitals and health services.
Most of the payments for HIV/AIDS and harm reduction/drug use patient groups came from non‐member companies (71.3% [$3,606,553/$5,056,836] and 84.7% [$340,578/$402,318] respectively; Table 3). These payments came from pharmaceutical companies specialising in these clinical areas (ViiV Healthcare, Camurus, Indivior).
3.4. Discussion
Pharmaceutical industry payments to patient groups in Australia remains common and widespread. Over the decade from 2013 to 2022, 390 patient groups received over $95.7 million from 45 companies. These payments were skewed towards selected patient groups, with almost 50% (47.9%; $45,856,940/$95,724,493) going to only 13 groups.
This study builds on a previous cross sectional analysis of pharmaceutical industry funding of Australian patient groups by Fabbri and colleagues [14]. In this analysis, we found that, over time, payments have shifted away from some of the main clinical areas identified in the previous analysis, especially eye health and the nervous system, and have been consolidated in cancer groups, while the overall value of reported payments have decreased. The most recent disclosures published on the Medicines Australia website suggest that this trend may not continue, as in 2024, they reported a total of $10.2 million in payments to patient groups, which is the highest total value (adjusted for inflation) since 2018 [16, 20].
Previous studies have shown that pharmaceutical companies tend to selectively fund groups focused on diseases for which the companies have new and upcoming medicines [7, 29]. The shifts in funding we observed are also reflected in the changing therapeutic landscape, with more newer and targeted cancer therapies being developed and increasing in utilisation but few recent innovations within eye health [17, 30]. The consolidation of funds in cancer patient groups is consistent with research in the United Kingdom [6], Sweden [3] and Poland [31], and may lead to patient group advocacy being focused on industry‐friendly topics, such as approval and subsidy of new drugs in the pipeline or under patent, while the voices of less well‐funded groups supporting disease processes where there are no new drugs remain unheard.
We found that pharmaceutical industry funding could make up a substantial proportion of a patient group's income, contributing over 50% of the income for 9 (6.8%) of the 132 groups that received industry funding in 2022. Similarly, other studies from the United Kingdom [4] and the United States [9] have found that 4.5% and 11.9% of groups, respectively, derived more than half of their income from industry. Even where funding does not come with explicit expectations from the funder, due to their reliance on the pharmaceutical industry, these groups may feel pressured to advocate for certain positions in order to secure future funding [29, 32].
Transparency reporting is not currently mandated by law in Australia but is instead a part of the Medicines Australia Code of Conduct [33]. Despite improvements in the reporting of pharmaceutical industry interactions with patient groups since transparency measures were first introduced in 2009 [12, 13, 33], there remain significant limitations with current measures.
Disclosure of company payments to patient groups is only required by, and publicly available for, Medicines Australia member companies. These companies constitute the majority of the prescription pharmaceutical industry in Australia, but the membership list has changed over time, affecting which companies have provided reports (Table S1). This may explain some of the variability we observed in reported payments, as only 19/45 (42%) companies provided reports for all 10 years.
Beyond changes to Medicines Australia membership, there are also many companies that have never been members. This includes generic and over‐the‐counter medicine manufacturers who have their own trade associations which do not require members to disclose payments to patient groups [34, 35]. Therefore, any analysis that only uses Medicines Australia disclosures will inevitably underestimate the total value of payments. In an attempt to mitigate this, we also searched the websites of all non‐member companies with at least five prescription medicines registered in Australia [17]. Underestimation of funding was especially apparent for two of our clinical area categories (HIV/AIDS and harm reduction/drug use) where Medicines Australia member companies only contributed 28.7% ($1,450,283/$5,056,836) and 15.3% ($61,740/$402,318) of the payments (Table 3). As disclosure by non‐member companies is voluntary, we do not know if companies with no disclosures listed on their websites have provided unreported payments to patient groups.
In addition, what is considered a patient group is broad and not well defined and the Code of Conduct leaves it to member companies to decide what should be reported [33]. This has perhaps contributed to the inclusion of payments to groups that would not routinely be considered patient groups, including to universities, hospitals and other health services. Conversely, it is difficult to know if payments to bona fide patient groups are also missing from the reports. Some of this confusion may be addressed through changes in the 20th edition of the Medicines Australia Code of Conduct, which now requires companies to also disclose payments to healthcare organisations; however, this has only been in place since March 2025 [36].
In a recent study of disclosure practices in the United Kingdom, where companies are required to provide details on their methodology, researchers found that there was significant variation in how disclosures were reported [37]. This included whether or not value‐added tax was included in the payment, which would have a significant impact on overall values of payments. Australian disclosure reports are not required to provide methodological details and thus there is no way of knowing if methods vary between companies or between years.
Finally, there was variation in how groups were named in the disclosure reports. Some were due to name changes over time (e.g., Osteoporosis Australia renamed to Healthy Bones Australia) or organisations operating under a different name to their official name on the Charity Register (e.g., Australian Crohn's and Colitis Association operates as Crohn's and Colitis Australia). Other variations were due to spelling mistakes and other data entry errors [18]. Although we were able to correct these reporting errors, they raise concerns that there may be other less apparent errors in the dataset, especially for patient groups that are not registered with the ACNC.
To improve transparency, disclosure requirements should apply to all pharmaceutical companies in the Australian market, not just members of Medicines Australia, and reports should be managed by an independent body and made more consistent, accessible and usable. A legislated model, similar to how the United States Physician Payments Sunshine Act mandates disclosure of payments to American physicians, could deal with some of these issues [38].
3.4.1. Limitations
We were limited by data availability, as we relied on Medicines Australia disclosure reports and voluntary disclosures. Data cleaning was also conducted by one researcher (AH) in discussion with a second researcher (BM) for ambiguous cases. A list of edits to the names of patient groups has been included with the published database [18].
The proportions of funding from industry have been calculated using the mean of two financial reports from the patient groups due to the Charity Register reporting by financial year (July–June), whereas Medicines Australia's reporting is by calendar year. This is not an ideal estimate of actual income in the 2022 calendar year, especially for groups where the income fluctuated significantly, resulting in one case where a patient group had over 100% of their income from pharmaceutical payments in our data. This group would have received the payment in the financial year with higher income.
3.4.2. Conclusion
Patient groups have a vital role in representing patient and carer interests in decisions that will affect them and the importance of patient representation in research, policy and health services has been increasingly recognised in Australia and globally. These groups require funding to continue operating, much of which currently comes from the pharmaceutical industry. Between 2013 and 2022, disclosed payments from the pharmaceutical industry to patient groups were widespread but also skewed towards conditions linked to marketed drugs. Although further research is still needed on the effects of these payments on patient group priorities and positions [8], the conflict of interest caused by these financial relationships may create a risk of industry influence, impairing the ability of patient groups to be an unbiased voice for their communities.
Author Contributions
Ashleigh Hooimeyer: conceptualisation, data curation, methodology, formal analysis, validation, visualisation, writing (original draft), writing (review and editing). Annim Mohammad: data curation, writing (review and editing). Alice Fabbri: conceptualisation, writing (review and editing). Lisa Parker: writing (review and editing). Kellia Chiu: validation, writing (review and editing). Barbara Mintzes: conceptualisation, data curation, methodology, supervision, validation, writing (review and editing).
Funding
Ashleigh Hooimeyer received a research scholarship through the Australian Government Research Training Program (https://doi.org/10.82133/C42F‐K220). The funder had no role in the planning, writing or publication of this work.
Disclosure
Not commissioned; externally peer reviewed.
Conflicts of Interest
Barbara Mintzes has acted as an expert witness for Health Canada and is currently an expert witness for the Australian Therapeutic Goods Administration on two legal challenges of regulatory decisions; she has no other competing interests. Alice Fabbri is currently working as a public health physician at the Hygiene and Public Health Unit Ravenna, Department of Public Health, Azienda Sanitaria Locale, Romagna, Italy.
Supporting information
Table S1: Medicines Australia membership status for included companies.
Table S2: Patient groups that received over 10% of their income from the pharmaceutical industry in 2022.
Figure S1: Scatter plot of total value of disclosed payments per year (adjusted for inflation to 2022 AUD value) with linear trendline, excluding payments to groups classified as miscellaneous (e.g., universities, hospitals, health services).
Figure S2: Scatter plots with trendlines showing correlation of pharmaceutical industry funding with year by clinical area for clinical areas that received at least 1% of the total funding.
Acknowledgements
We thank Swestika Swandari and Melanie Phan for their help with the creation of the payments database. Open access publishing facilitated by The University of Sydney, as part of the Wiley ‐ The University of Sydney agreement via the Council of Australasian University Librarians.
Data Availability Statement
The database of industry payment disclosures is publicly available in the University of Sydney eScholarship Repository (https://doi.org/10.25910/e8xg‐bw06).
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Associated Data
This section collects any data citations, data availability statements, or supplementary materials included in this article.
Supplementary Materials
Table S1: Medicines Australia membership status for included companies.
Table S2: Patient groups that received over 10% of their income from the pharmaceutical industry in 2022.
Figure S1: Scatter plot of total value of disclosed payments per year (adjusted for inflation to 2022 AUD value) with linear trendline, excluding payments to groups classified as miscellaneous (e.g., universities, hospitals, health services).
Figure S2: Scatter plots with trendlines showing correlation of pharmaceutical industry funding with year by clinical area for clinical areas that received at least 1% of the total funding.
Data Availability Statement
The database of industry payment disclosures is publicly available in the University of Sydney eScholarship Repository (https://doi.org/10.25910/e8xg‐bw06).