Patient group practices to protect against undue influence from pharmaceutical industry sponsors: dominant themes and variation in practice
| Patient group practices | Example quotes from participants |
| Sponsor exclusivity | |
| Will not accept exclusive (single company) sponsorship | ‘Why would you just work with one company? That’s giving out all the wrong messages.’ Felicity, CEO |
| Has restrictions on accepting exclusive (single company) sponsorship, for example, only for small projects and/or clear fee for service | ‘I’ve got a [big] meeting coming up soon and a couple of companies wanted exclusively me to go to them [for registration and travel funding] and I said, ‘No, I feel uncomfortable’ … It’s better if it’s funding from all of them rather than just one … There’s one company that’s offered me to go [on] another [short] trip … I accepted that flight because they want me to do a presentation there … otherwise normally no.’ Emily, CEO |
| Will accept exclusive (single company) sponsorship without restriction | ‘Now we really have maybe one or two serious [Pharma] companies only… at the moment it’s only one actually.’ Neil, CEO |
| Brand-marketing | |
| Will not mention branded products | ‘When you’re talking about any particular drug effect you talk about the generic not the brand.’ Irene, CEO |
| Will not mention branded products to the public; will allow company ads for branded products in patient group magazine aimed at primary care practitioners | ‘We have a policy of not promoting specific brands. We don’t promote any products. We have a policy if patients come to us, asking about products, we never actually give advice. We only give advice about general factors or lifestyle … We do accept in our GP magazines, the advertisement from some companies about their products, but that comes without any endorsement from [our group] and it comes directly from the company so this is fairly transparent.’ Neil, CEO |
| Will mention branded products to the public on request | ‘We don't mention the brand names in any of our written material [but] people call us and say, ‘Oh, what product is that?’ And we’ll say, ‘Well, there’s (Branded Product 1), there’s also this, there’s also that.’ So we do—we try to help people without pushing a particular line.’ Ian, CEO |
| Agenda setting | |
| Will not accept funder-initiated projects | ‘Pharmaceutical funding is a bit of a last resort so we use it where we can’t get money to do things that have already been strategically planned out. So if pharma comes to us and says, hey how about this project, that doesn’t happen.’ Gina, Board member |
| Will accept and consider funder-initiated ideas with restrictions | ‘I’m also open to pharmaceutical companies coming to me with ideas … but I’m only interested in partnerships with Pharma if we’re there from the outset and if we are the ones who are managing the project.’ Robyn, CEO |
| Will always accept and consider funder-initiated ideas | ‘Sometimes [the projects are] initiated by us…and in some cases it’s them contacting us about a specific initiative that … they’ve got underway and want us to be involved in.’ Lyn, CEO |
| Funder involvement in patient group advocacy | |
| Will not allow funder to influence group’s advocacy | ‘You can’t have a situation where Acme Pharmaceuticals is paying [their Public Relations people] to write [your] media release… that just gets you into trouble … where someone is drafting a press release for you, then you just get herded.’ Chris, Board member |
| May act independently on industry prompts about advocacy | ‘If a company approaches us that they’ve got a new drug coming up for the Consumer Commission [drug regulator] then we leak it out to our consumers on the day, ‘this is what it is, this is what it does, here’s some information about it, if you’d like to make a submission, you know, please do’ … And if we think it’s a good thing we do a very brief submission ourselves.’ Irene, CEO |
| May cobadge advocacy submissions to government or media with industry funder | ‘Sometimes a Pharma and if we’ve got a good relationship with them and they’re not—say for example recently one of the [disease a] drugs got PBS listing [author note: government subsidy through the Pharmaceutical Benefits Scheme] and we were happy to be quoted to say like, the incidence of [disease a] is blah-blah-blah, but not endorsing their drug so, that was fine.’ Irene, CEO |
| (Reported about others) Funder directly shapes the group’s advocacy agenda | ‘I do know that some health consumer organisations in the past and now, are funded by pharmaceutical companies and then lobby for medications to be listed on the PBS [for government subsidy]. We’ve never done that, never.’ Robyn, CEO |
| Funder influence over content of patient group activities | |
| Will not allow funder input into content | ‘We’re very deliberate in having an independent editorial with our [patient group] magazine. So Pharma do fund a little bit of that, money goes towards our [magazine] editorial but we make sure that there is no, they don’t sit in any of our editorial committees, they don’t get a say in what we do or print.’ Kevin, Board member |
| Will not allow funder input into content of formal educational event; companies can fund and market products to health professionals at educational fringe | ‘We offer sponsorship packages [to the pharmaceutical companies for educational events] … There’s two different days that we do, one is for allied health professionals and one is for GPs. The allied health professionals, the pharma companies aren’t that interested in because they don’t have prescription pads, and the GP seminar days are the one that they have much more interest in … They come on the day, have a stand, have their information.’ Sally, CEO |
| Potential for funder influence over content through medical experts who may themselves accept industry money | ‘We have … scrutiny from our medical scientific committee, which is, as I said, 12 people who represent different specialities… they all declare their conflicts of interest’ Neil, CEO |
| Will consider requests from funder to alter content | ‘We’ve got [a new booklet] at the moment that we’re working on, we developed that in collaboration with some health consumers, the health professionals, the health educators … When we’re absolutely happy with it I [will] give it to the [pharmaceutical industry] partner to look at and they will, if they come back with any suggestions they understand that it is at the discretion of [our patient group] if we accept what their suggestions might be.’ Robyn, CEO |
CEO, Chief Executive Officer; GPs, General Practitioners.