Table 1.
Characteristics of patient groups invited to participate, participants interviewed, and those invited that did not participate. Values are numbers (percentages) unless stated otherwise
| Patient group characteristics | Participants interviewed (n=27)* | Invited but did not participate (n=28) |
|---|---|---|
| Focus | ||
| Specific disease or health condition | 21 (77.8) | 26 (92.9) |
| General consumer health | 6 (22.2) | 2 (7.1) |
| Body system of specific health condition | Neurological, respiratory, renal, sensorineural, dermatological, musculoskeletal, women’s health, multisystem | Neurological, haematological, gastrointestinal, respiratory, mental health, women’s health, sensorineural, dermatological, multisystem |
| Pathological process of specific health condition | Cancer, degenerative, inflammatory, genetic, immunological, infective, other pathological processes | Cancer, inflammatory, genetic, immunological, endocrine, infective, other pathological processes |
| Geographical scope | ||
| National | 15 (55.6) | 19 (67.8) |
| Regional† | 12 (44.4) | 9 (32.1) |
| Level of pharmaceutical industry funding ($A) | ||
| Top quarter (103 001‡-4 107 981)§ | 13 (48.1) | 15 (53.6) |
| Mid to bottom quarter (1-103 000)§ | 4 (14.8) | 4 (14.3) |
| No funding¶ | 10/27 (37.0) | 9 (32.1) |
| Role of participant in group | ||
| Staff, CEO (including acting) | 19 (70.4) | NA |
| Staff, other** | 4 (14.8) | NA |
| Board member | 4 (14.8) | NA |
NA=not available (recruitment requests were generally sent to generic patient group enquiry email addresses rather than to specific individuals).
The four groups from which two participants were interviewed had the following characteristics: (1) general consumer health focus, regional group, no pharmaceutical industry funding; (2, 3) disease specific focus, national group, top quarter pharmaceutical industry funding; (4) disease specific focus, regional group, mid quarter funding.
Regional groups are based in specific Australian states or territories and serve members living within those states; most are affiliated with a national group with the same health focus but have separate funding sources.
£54 300; €63 600.
Group’s position in list of patient groups that received money from pharmaceutical industry, as listed in our database of funding disclosed by Medicines Australia members during the years 2013-16 inclusive.
Not listed on our database of disclosed pharmaceutical funding of consumer health groups and no obvious declaration of pharmaceutical funding on group website.
Research manager, secretary, fundraising manager.