TABLE 1—

The Extent and Disclosure of PAO–Industry Ties: Findings From Recent Studies

Study	Sample	Methods	PAOs With Financial Ties to Drug, Device, or Biotechnology Companies, %	Findings Related to Disclosure of Financial Ties
Abola and Prasad7	PAOs for specific cancer subtypes recommended by the National Comprehensive Cancer Network (n = 68)	Review of PAO Web sites	≥ 75	76.0% of PAOs reported whether they had biopharmaceutical sponsorship
Claypool, Public Citizen8	PAOs that signed public letters opposing a Medicare Part B demonstration project (n = 147)	Review of PAO Web sites and annual reports	≥ 75	Study did not investigate the extent of PAOs’ disclosure
Hilzenrath, Project on Government Oversight9	PAOs that participated in the FDA’s PDUFA VI discussions (n = 42)	Review of PAO Web sites	≥ 93	Study did not investigate the extent of PAOs’ disclosure
McCoy et al.5	US-based PAOs with annual revenue ≥ $7.5 (n = 104)	Review of PAO Web sites and annual reports	≥ 83	88.0% of PAOs disclosed names of donors; 52.0% of PAOs disclosed donation amounts in ranges; 5.0% disclosed donation amounts in exact figures; 10.0% disclosed the uses of individual donations
Rose et al.10	Nationally representative random sample of US-based PAOs (n = 245a)	Survey of PAO leaders	67b	73 of 284 respondents (25.7%) reported that their organizations have policies for public disclosure of financial relationships
Rothman et al.4	PAOs awarded grants from Eli Lily during the first 2 quarters of 2007 (n = 188)	Review of PAO Web sites and annual reports	Sample included only PAOs that had received grants from Eli Lilly	25.0% of PAOs acknowledged Lilly’s contributions on their Web sites; 18.0% acknowledged Lilly’s contributions in their annual report; no PAOs disclosed the exact amount of a Lilly grant

Note. FDA = US Food and Drug Administration; PAO = patient advocacy organization; PDUFA = Prescription Drug User Fee Act.

^aNumber of respondents who provided information about their funding. Overall, 298 respondents returned surveys.

^bPercentage of respondents reporting financial ties to for-profit companies in any sector, including but not limited to the pharmaceutical, device, and biotechnology sectors.