PATIENT MATTERS
To start with, could you give us a bit of background on you and your work? I’ve been a patient most of my life; I like to tell people that my life history and my medical history is a series of unfortunate events: whatever could go wrong did. However, at the same time when all of those things went wrong, something amazing happened that changed my perspective, that gave me more information on how to better live my life. Now what I am interested in is patients and our data – how can we use this collective intelligence in a collaborative way to really bring viable solutions for all of us?
As someone who’s had experience of the trial industry as a patient, what would be the main thing you want the pharma industry to know? I would say first don’t assume people know what clinical trials are, and also don’t assume that they know them the same way that you do. What I think we’re missing in this industry is a lot of education, a lot of awareness around what clinical trials actually are. Here we are trying to talk about the patient journey, to map out the patient’s journey, and yet we’re talking about patients who don’t even know how to have a good relationship with their physician. We need to get back to basics and ensure communities are adequately communicated with in language they understand. I am also a big believer in expanding awareness on clinical trials for what they are: we should offer clinical trials at that time of signing up for an insurance programme. Why aren’t we saying to patients, if you happen to get sick, here are the standard tried treatments available, but if you choose to we also have this trial available and really offer trials as a treatment option? This is especially true in a world of decentralised trials as these are an opportunity to involve a patient and their own physician instead of sending them off to different locations and putting all these extra burdens on trial participants. With virtual trials and new technologies, we’re really moving into a whole different world and so I think it’s that education and communication, that nobody wants to pay for, that would really end up saving us a lot of money and heartache as we move forward.
In your opinion, how much of a barrier to effective trial participation is ineffective
70 | Outsourcing in Clinical Trials Handbook
translation and localisation of clinical trials? I think it’s a huge area! We look at the healthcare system mostly from a North American or European perspective and we don’t pull in people from other areas; everybody else is watching us as a model, but we are still not getting these things right. In a worldwide perspective, there’s a real difference in the understanding of clinical trials. Other countries might just be starting to hear about clinical trials, whereas here in the US and Europe we’re already focused on decentralised trials – there’s a huge gap here. We’re experiencing the digital age and this new data economy, and yet half our population doesn’t have access to these digital products, so there is a huge digital divide. And that divide just widens when you go to different countries.
Different cultures also affect how people react to things, and I think as an industry we try to solve the problems without really getting in and talking to these communities and working with them. Even when we do work with communities we use check boxes instead of really putting in the effort to get the patient voice involved. We look at people who are ‘social media influencers’ because they have big followings, without acknowledging that people could pay for followings – surely how effectively they engage with their community is more important than how many followers they have? We have come to this point where you have a lot of patients who have something to say about clinical trials, but what they’re saying may not be factually correct: they may not know the industry, and yet we’re using them as the benchmark for everyone else. So as an industry, I think we have to be very careful about who we bring into these discussions and how much they know about the topics that they’re going to be discussing. Clinical trials are always best when done in the patient voice, so that’s what we’re missing; we’re trying to fill these slots and tick these boxes but we’re doing it with the wrong people, we’re having the wrong conversations. We need to go back to education and awareness – and once you build relationships and communicate effectively with those key players, good things will start happening for the trial industry. The other thing I think we need is to mark people who participate in these trials for what they are: they are heroes. You take Tylenol (for example): somebody else put their life on the
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