PATIENT MATTERS
line to make it happen for you, so I think we need to change the focus of clinical trials from this last-ditch option that’s only good for when you’ve tried everything else, to recognising that people are putting their lives on the line to get better medicines approved for us all.
There is a lot of misinformation among the patient community at the moment. Is that a failure on the industry’s part? I don’t think it’s a failure on pharma’s part, I think it’s a failure of the system we built. It’s not just misinformation, it’s disinformation – it’s things that are specifically said that are not known to be true. Small groups of patients are pushing false information out to each other, resulting in people demanding products that have not been proven to work. One of the things I struggle with in the industry is that, in the same disease space, we allow campaigns from different companies pushing different information and different treatments. Information campaigns don’t offer all drugs as an option; they only advertise their own product. However, if as an industry we really want to encourage open discussions about clinical trials, we have to make people aware of what’s out there for everything – it can’t just be that this is the one drug you have available in your area. There needs to be resources where patients have all of this information at their disposal, and not just branded information by one company because it makes patients believe
the industry has an agenda besides patient health. Giving patient communities all of the options in a way they can understand will also enhance trust amongst these communities.
Could you comment a bit more on diversity inclusion? Do you think the industry is taking good steps towards promoting diversity and inclusion or do we still have a long way to go? We have a long way to go. We still have to have conversations around diversity and inclusion and really educate people. However, as an industry, we’re getting better than even just five years ago – when I started in this space I couldn’t even get somebody to listen to me, and now we’re having these conversations, which is great. I think in order to do this better, we need to start bringing in different people when we talk about clinical trials as it’s interesting to hear the different sides and perspectives on it. We’re having these conversations but not including everyone, and we’re pushing the blame of the failures on to somebody else. We have a lot of patients that have been through these processes who can talk to other patients, who can explain clinical trials with lived experience, so why not utilise some of these community members? There is still a long way to go – we’re getting there. I think the key is really involving and incorporating people and going back to education and awareness. Educating and including a community early will save us millions of dollars down the line.
Outsourcing in Clinical Trials Handbook | 71
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