Pharma sponsorship of health consumer groups

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Welcome to the Australian Prescriber Podcast. My name is Ashlea Broomfield, and I'll be your host for this episode. Today I am joined by Lisa Parker, who is a clinical researcher at Sydney University, and also works as a medical doctor in oncology. Welcome Lisa.

Thanks, Ashlea. Lovely to be here.

Lisa, you have written an editorial for Australian Prescriber. You were talking around the risks associated with pharmaceutical sponsorship of consumer health groups, and I was hoping that we could explore that a little bit today. Before we begin, could you just give us a bit of definition around what you mean by a consumer health group and what pharmaceutical sponsorship would entail?

So, there are probably two main types of health consumer group. And the terminology varies a bit from country to country, so patient organisation, patient group, health consumer group. I'm a bit ambidextrous with whatever terminology I use, but I guess, the two main types are, firstly, the ones that are based particularly around a disease or a body system, so Heart Foundation or something more specific like endometriosis or something like that. And then, the second group would be, perhaps an umbrella group you'd call them. So they are more focused on access to health services and things like that rather than specifically about diseases or disease groups.

And if we consider pharmaceutical sponsorship of these particular groups, how does that normally occur? What ways is sponsorship given?

Well, lots of different ways, perhaps depending a little bit on the group. And actually, I did a study talking to people from patient groups in Australia, trying to really find out how the two sectors interacted really. So, it might be umm a patient group wants to write a new book, patient support book, and the company would give money for that. Or there would be some kind of educational event and the company might give money to the patient group to run that educational event, a public awareness campaign, some sort of advertising campaign.

And what are some of the problems that can occur in terms of pharmaceutical sponsorship of consumer health groups?

So I think there's a few issues, and perhaps, to start with, akin to the evidence around the influence of even small amounts of money from companies on doctors' prescribing habits... So it seems, therefore, pretty likely that even small amounts of money to patient groups would have an influence. And perhaps that might mean that the patient group would perhaps not talk to patients as much about adverse safety profiles of a medication as they otherwise would. They might be more likely to advocate for or lobby for a particular medicine than otherwise they would. So, it may change their actions or the way they talk about medications with patients.

I guess, the other side of it, though, is that the patient groups that get funded tend to be the ones that have drugs that are under patent and that are relevant to the particular company that's funding them. I mean, that's not a surprise to anybody. If you're running a company, you're not going to throw your money around to everybody, you're going to give it to the patient group that has a focus in the area that you've got a focus in.

But I think the upshot of that, if you look across the whole sector, is that the patient groups that focus on illnesses that don't use a lot of medicines or that use medicines that are now out of patent, they're just not getting the money. And so, their voices are not being heard. They might actually fold because they run out of money compared to these other groups that are getting a lot of money. They might kind of just be drowned out. So I think that can skew the way that we as the public think about what's important and what are the big ticket health issues around at the moment. Because all we're hearing is from a particular bunch of patient groups who are focused, coincidentally, on topics that need new medicines. So I think that's the sort of background issue that perhaps not everybody thinks about.

Listening to you, it seems as though it could have an impact in terms of influence in relation to the overall systemic structure of how we practice medicine. And when we consider that already a lot of funding goes into tertiary centres as opposed to preventative medicine, I wonder whether there could be a skew towards prescribing versus, I guess, a lifestyle medicine approach where you're looking at ways that you can prevent illness before it occurs that doesn't actually require as much medication or very cheap medication that's already listed on the PBS.

Or management strategies that are non-pharmacological based so cognitive behavioural therapy or physiotherapy or something that's not about taking a relatively new medication that's currently under patent.

So we spoke a little bit about the issues in terms of how that might direct a consumer group activity and how that might have an impact in terms of medicine in general. Are there any sort of problematic things that can show up for organisations in terms of their focus of support for members?

Yeah, definitely. So, I think it can change their focus, potentially. So, for example, some people that I spoke with said that they had been offered money by companies to do a particular activity, write a book about something, which wasn't really something they wanted to do, it wasn't their core focus. But there was good money on offer so they did it. So, not that that's a bad thing to do that, but they felt there was an opportunity cost involved so they weren't able to put the time and effort into something that they really wanted to do for the benefit of their patients, they actually ended up doing something that the company wanted them to do. So I think that can be problematic as well.

So, I think people working in patient groups, like doctors, feel very strongly that they're able to withstand bias and they're not influenced by money. We all think we're beyond it, right? But the companies are not throwing around money for no reason. It works. So, I think it's likely that some people, somewhere along the line, are getting influenced, whether it be because they’ve got a different agenda to what they would normally do, or they're saying, or not saying something that otherwise would be mentioned or not mentioned. I think there are ways that drug companies get what they want if they've got enough money.

One of the things that sometimes consumer health groups are involved with is consumer consultation on guidelines and clinical guidelines in terms of management of certain illnesses or approaches to management. Talking with you now, I'm wondering whether that would have, actually, a big impact on some of the guidelines that are written if there's that bias underneath it. How confident can we be that some of the guidelines that have that input from groups that are funded by pharmaceutical sponsorship don't have a bias in relation to recommendations?

Yeah, look, I think that's a very good point. Look, I think there is a risk of bias if you've got a health consumer who's coming from a group with that strong financial support from companies. And let's be honest, most groups seem to be in that category. Then I think there is a risk of bias. And I'm not saying there is a bias, but there is a risk of bias. So I would suggest that the people who are writing guidelines, who want to minimise the risk of bias, should try and find patient advocates or consumers from groups that are not funded by pharmaceutical companies.

And so when I talked at the very beginning about different sorts of patient groups, certainly those groups that tend to be more health consumer orientated are typically not funded by drug companies. And so, each state would have one of those, for instance, there's the umbrella group, Consumers Health Forum of Australia, so we've got one in New South Wales, Health Consumers New South Wales. So those groups often will train up people to work with guideline committees or researchers if they want a consumer voice. And those groups are typically not funded by pharmaceutical companies.

So, yeah. I guess what I'm saying for your audience, I suppose, is that if we, as doctors or pharmacologists or people organising guidelines, are thinking about patient groups and referring our patients to support groups, then I think it behooves us to have a look at those patient groups and find out who's funding them. Sadly, a lot of patient groups don't make that transparent. And I think, I'm hoping, that that might change. We did some work last year, just before the lockdown, with patient groups, looking at these kinds of issues and hopefully kind of raising a bit of awareness about this issue. And part of that is to encourage patient groups to be more transparent about where their money comes from.

So I think as doctors we should ask questions, we should look up the websites, we should check financial reports. I mean, it's kind of onerous. It shouldn't be, but it is. But I think we should check before we willy nilly say to patients, "This is a great support group." They may do great things, but I just think we should be sensible about checking where the money's coming from.

And is there a duty of disclosure in the same way as we as medical professionals have?

Interesting. So, I would say yes, but it's not professionally grounded perhaps as it is for doctors. Even for doctors, it's not compulsory, right, it's just something that we may choose to do or not choose to do. So I don't know how much you know about disclosure in Australia, but it's a self-regulatory system. So the companies that belong to the umbrella pharmaceutical industry group abide by that umbrella group’s code of conduct, which suggests that they should or must disclose all the money that they are giving to health professionals, for example. And not all companies belong to that umbrella group so they don't all subscribe to that code of conduct. In the US, it's a compulsory thing, it's mandated by law. So that should be really what's going on here, but it's not. And ideally, they would also disclose money that they're giving to patient groups.

But it should go the other way. I think it should go the other way. As doctors, we should disclose. And as patient groups, there should be easy disclosure. And this is one of the things that we talked about with patient groups. What does disclosure mean? Does it just mean putting the company logo on your website, or should you report who you're receiving money from, how much money you're receiving, what you're doing with the money, what percentage of your overall group funds come from the pharmaceutical industry? I mean, I think we can ask patient groups to be quite granular about where the money's come from and where it's going. And I think that would be a step forward so I would encourage that.

I think, sadly, there's a lack of independent guidance for patient groups about these topics. So there is a document that Consumers Health Forum of Australia produced in conjunction with Medicines Australia, which is the industry umbrella group, and it's got a lot of useful things in it for patient groups, but it's not an independent document. So it would be great to see patient groups working towards something more independent that also gave some very, very practical ideas.

And I guess the question then is where is all the money going to come from if pharmaceutical sponsorship is then frowned upon and said no to. I’m not expecting that you’ll have the answer to that but I thought you might be able to provide some sort of … you know…

Yeah. So there's a few different models that people talk about. Some people talk about sort of overall tax on the industry so that all companies should pay a certain amount of percentage of their profits into a central kind of bucket that then a third party will distribute in a grant process or something to patient groups. So that seems like it's got a lot of merit. Perhaps the slight problem with that is it's still the pharmaceutical companies putting in the money so there's still going to be that agenda bias towards things that the pharmaceutical companies are likely to want to spend money on.

So anyway, that's one option. Another option is, really, talking to the government about some more public funding or encouraging the public to see this as a very important part. I guess I have a concern about the trouble with funding that comes from philanthropy or from public appeal, because it tends, again, to be quite a skewed thing. So babies and breasts typically have a lot of appeal to philanthropists or public donors, which is great if you've a baby or a breast-related topic, but not so great if you are a patient group supporting people with a facial condition or a not very popular skin condition or something that's just not as easy to get media attention for. So I think it's very difficult. I don't mean to be negative about breasts and babies, and obviously, there's a huge amount of importance there. But I think there's also some concern about who gets the money and how that works. So, look, I don't have the answers. I wish I did. But I don't think that means we shouldn't be asking questions.

Is there anything else that you wanted to add that I didn't ask that you felt was really important to say?

I guess one of the things that we found with our research was that patient groups, as I said, are very concerned about this issue, they're very aware of this issue, very aware of the need to be independent or wanting to be independent and wanting to be seen to be independent because that's an important part of their image, I suppose. But we also found that patient groups had a lot of variety in how they try to maintain that independence. So some of them, for instance, would never talk about brand names and would never join with companies in advocacy arrangements. But others said, "Well, we're quite happy to talk about brand names if patients ask us. And, well, if there's a good product and the company wants us to put out a joint press release, well, sure, we'll do that."

So, I don't know what's independent and what's not. We can all make up our own minds about that. But it just seemed to me that patient groups had very different ideas and surely they're not all right. So, it would be good, I think, to get some, perhaps consensus on some practical kind of guidance that, "Actually, this is what you need to do to minimise the risk of bias in your organisation." So I'd really like to encourage patient groups to talk about these things.

Well, thank you so much for joining me today. It's always useful to talk around the ethics of how we do things in the health sector and in all different ways. So, I really appreciate you coming on and chatting with me today.

Thanks very much, Ashlea. It's great to have the opportunity.

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The views of the hosts and the guests in this episode are their own and may not represent NPS MedicineWise or Australian Prescriber. My name is Ashlea Broomfield. Thank you very much.