- Voiceover
Patient's Side of the Story. Stories by Servier Saclay Patient Board.
- Tom
Hello and welcome to Paris Saclay. At Servier, we believe that listening to and involving patients is extremely valuable. After all, they have a mightily important first-hand knowledge of both diseases and treatments, and this is key to progress in terms of research and innovation. In fact, this knowledge is key to improving all aspects of their care. One way we acquired this knowledge was through the Servier Saclay Research and Development Patient Board, a team of 18 people with a whole range of different conditions. Well, this board has now ended, and speaking to its members was extremely enriching. So a big thank you to them. Unlike the other podcasts we've released, in this edition, we're not going to be focusing on individuals and their personal experiences. Instead, we're going to be finding out more about why we listen to patients, what patient advocacy involves, and why our patients advocates feel it's so important to be involved in this conversation with Servier. Let's start by looking more closely at why patients' perspectives are so central to what happens here at the Servier R&D Institute, and why it is important for pharmaceutical companies to listen to patients, to find out what matters to them, and how we can make them part of the decision-making process. I spoke to one of our advocates, Estelle, who was diagnosed with endometriosis. She gave us this really great analogy of why the patient's voice is so crucial.
- Estelle
If you were, for example, to be inventing an electronic violin, you would not just develop it and then give it to a violinist and say, "yeah, we have the perfect violin for you." You would involve them from the beginning. You would say, "what is there on the market? What do you need? What's missing? Why that?" but then "What's important for you ? What would you like? What are your dreams?" And you would consult with them all along the way. And that's exactly what should be happening with patients. And it's happening increasingly. All that, you know, scientists, they have this incredible expertise and knowledge in science. And they've been focusing on things in a very scientific way, like a target, a molecule that will have this and that effect in the body, which they associate with the disease. But, if they were to, you know, stop and step back and say, let me talk to a bunch of patients, let me hear about their broader experience, we could actually, you know, give them like idea, sort of eureka moments where they could think, well, actually, let's tackle this from a completely different way. And also, once there's a medicine on the market, we need to be part of describing how it's working for patients. It's not just like "here's an end product, we've sold it, that's it." They need to be in touch with the patient community to get the kind of real world evidence, the real experience of thousands of people now, real patients, not clinical trial participants, but real patients trying this medicine or using it in their daily life, what happened. We need to be part of that information loop, giving them that back to the pharma company.
- Tom
So, by being advocates, patients can contribute to science, contribute to research and development, and share their individual stories. And from this storytelling comes valuable information, such as scientific evidence, but also information for other patients about how to live with this or that condition. And this, in turn, gives people a sense that they're not alone, meaning they feel empowered and reassured. That can be particularly valuable when there is a social stigma associated with the condition. This was pointed out by Tamás, who lives with HIV and depression.
- Tamás
It's your choice whether you come out with your illness, and it's specifically true for stigmatizing conditions like HIV or depression, other mental conditions or illnesses. But if there are patient advocates who do that for you, that can be tremendously empowering and reassuring. Because you can say that, well, it is difficult and maybe I don't want to come out with my HIV status, but there's this guy and that girl and the other person who have done it and they have survived. So that patient advocates are also living with messages to survival and to coping strategies.
- Tom
And that was Tamás speaking to us there, and he made the really important point about what he called life after diagnosis. So what does the work of a Servier patient advocate typically involve? The answer is, it's extremely varied. When I spoke to Thomas, who has cystic fibrosis, I asked him for more about his role.
- Thomas
The work I did in Servier varies. But basically it's about how companies like Servier can work more closely and in more meaningful ways with patients. It could be helping them to develop a startup incubator. and how to connect that startup to the patient community. It could be helping, say, to design hybrid decentralized trials, or it could be something like connecting the inside of a building, like any research campus, with a patient-centric mindset.
- Tom
How did Thomas get involved in patient advocacy in the first place? Well, here's what he told us about the first advocacy event he ever attended.
- Thomas
There was all kinds of people there. It could be leukemia advocates, diabetic advocates, people with cystic fibrosis, their supporters, you name it kind of thing. And it was the first at a time that I connected with people who knew what it was like to not have a straightforward life. And for me, it was like instant. I knew this is where I belong. This is what I want to do. And it was just... it just simply made sense. And right now, I wouldn't change a single thing about it. I'm grateful.
- Tom
And that was Thomas speaking to me there. So who is a typical patient advocate on the Servier board? Well, as we said, there are 18 individuals with a range of different pathologies. I asked one of them, Janet, who was diagnosed with tongue cancer four years ago, to tell me a little more about who's on the board.
- Janet
Everyone on the board has some sort of disease. It might be cerebral palsy, cancer, Parkinson's, and therefore they have first-hand knowledge on what that disease is causing them, how it's changing their lifestyle, how it's changing their mental approach, how it changes their work life. There are a whole load of different things depending on the disease and the stages of the disease. So each person, I think, wants to give back to help future patients and also make sure that the pharmaceutical company, Servier, is really taking on board our views of things.
- Tom
Janet went on to give me a specific example of how this view of things, this feedback, was then put to good use. She raised the question, are the instructions which accompany medications always clear and easy to understand? And equally important : is that medication in an appropriate format for someone like Janet, who had difficulty swallowing after her surgery? Here's what she said about her experience in this regard.
- Janet
When I came home from hospital, I had a slight infection on my wrist, and they gave me antibiotics that were enormous. Well, no way could I swallow those. So... pharmaceutical companies have to be aware to provide drugs in various different formats, whether it's liquid or solid or powder, whatever, because after surgery, particularly head and neck cancer, your ability to take certain drugs is different. I ended up initially having a pestle and mortar trying to grind the drugs that I was on because it was the only way I could take them.
- Tom
Janet describes this feedback as giving her a sense of giving something back, which she says she hopes will be beneficial for future patients. But not only to future patients, because giving something back and helping others is actually beneficial to the patient advocate themselves.
- Janet
I consider what I do at Servier is brain food. It's things that make me think. I'm going to be helping with one group shortly on writing paper that will be presented at conferences. That sort of thing I find very useful for my own sanity, to feel I'm contributing to society.
- Tom
This was a recurrent theme which was echoed by many of those we spoke to when making our series of podcasts, The Patient's Side of the Story. It really came across, talking to all of our advocates, that the role of a patient advocate is that of an interface between the scientific world and the patient, someone who can provide knowledge in a concise and accessible way, and someone who can also provide reassurance and hope. But is a patient advocate someone with a scientific background and special training? Not necessarily, at least not to begin with. Here's what Linda, who has Sjögren's syndrome, told me.
- Linda
Whereas I ended up doing it because there was nobody else doing it, and although I have a background as a pharmacist, I have had no formal training in advocacy, but you end up doing what you can do for patients and for yourself.
- Tom
And what about special skills or criteria which typically make a good advocate? Here's how Estelle summed up the skill set for us.
- Estelle
A typical patient advocate would be somebody with... a lived experience, something that is not like treated and over, you know, I broke my toe, my toe is better. I feel like somebody who has to kind of manage their life in an ongoing way and adjust to that. And then they have the skills and expertise in their disease and in being a patient in these many systems in which they're inside. And then we all develop different kinds of areas, topics that we more burst in, that we're more passionate about.
- Tom
That was Estelle speaking to me there. I wanted to find out what the response has been to this type of advocacy work from the end user, the patient, with whom the advocates are ultimately communicating. Well, let's hear from Oriana. She was diagnosed in 2011 with a rare form of ovarian cancer. At the time, she was just 22 years old. Here's what she told me.
- Oriana
Well, I only have the feedback from those who contact me. So it might be a biased perception, but in general, when people approach me, they say that my story, it helped them and ask me some advice how to navigate or when to stop immunotherapy, for example.
- Tom
And what has this advocacy work brought to Oriana?
- Oriana
Well, I guess a lot of things. Serenity, a feeling of purpose, you know, it's like a way to transform something that was really bad to something helpful. And looking back towards those days, as I said before, where nothing was making sense. And now I can read my own story in a different way. Every single thing is connecting. Also being a patient advocate has put me in touch with so many incredible and inspirational people. It's fulfilling in so many levels.
- Tom
Well, thanks to her own resourcefulness and her incredible persistence, and despite a number of relapses, Oriana has been in remission for the past eight years. I hope this has given you a better idea about the rationale behind patient advocacy, who's involved and how it works. This kind of collaborative R&D is key to making progress in research. One message that really stands out for me is what Tamás said about his firm belief that there is life after diagnosis. From what our advocates have said, it is clearly an extremely varied and extremely important role. I would just like to wrap up by thanking our advocates, Janet, Linda, Estelle, Veerle, Begonya, Oriana, Thomas and Tamás for sharing their personal experiences with us. We wish them all the very best. Remember, you can hear each episode of The Patient's Side of the Story on our website and also on a number of other platforms. That's all we have time for. Thank you very much indeed for listening.
- Voiceover
Patient's Side of the Story. Stories by Servier Saclay Patient Board.
