Description

In this series of podcasts, we listen carefully to the individual experiences of patients, which they have been kind enough to share with us. We're talking mainly about adults, but today we're going to look at young patients, and for this we're joined by Begonya and Thomas. They are also part of Servier's patient engagement program. They'll be sharing their views on the value of incorporating the patient voice into medical research. 

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Transcription

• Voiceover

  Patient's Side of the Story. Stories by Servier Saclay Patient Board.

• Tom

  Hello and welcome to Paris Saclay for this edition of The Patient's Side of the Story, a series of podcasts which was born out of the close collaboration between the Servier Group and members of the Servier Saclay Research and Development Patient Board. This board works with the Servier teams to ensure patients' perspectives are taken into account at the new Servier R&D Institute at Paris Saclay. And these podcasts are a key feature of this, listening carefully to patients' individual experiences which they've been kind enough to share with us. In this series, we're talking mostly about adults, but today we're going to focus on younger patients. And for that, we're joined by Begonya and Thomas. Thank you both very much indeed for joining us.

• Thomas

  Thank you very much.

• Begonya

  Thank you so much, Thomas.

• Tom

  Thomas, can I start by asking you, could you just first introduce yourself and tell us about your condition?

• Thomas

  Absolutely. So I'm a patient engagement consultant with around six to seven years experience now. I work with patient organisations, pharmaceutical companies, contract research organisations, regulators, medical communications companies, and I'm also a person with cystic fibrosis, which is a life-limiting condition, which is primarily the digestive and respiratory systems. I was diagnosed when I was six weeks old and I'm 35 now.

• Tom

  Thanks a lot for that introduction, Thomas. And Begonya, let me turn to you. And just to be clear, you don't have a medical condition, but you do have first-hand knowledge of helping people who in some cases are severely unwell. Just tell us a bit about what you do.

• Begonya

  Yeah, my role is helping the involvement of children and young people in projects about clinical trials and innovation at Sant Joan de Déu Children's Hospital. This is a feeling which advocacy, lobbying and of course get more evidence about the impact is necessary. As you said, I'm not a patient in first person, but we need to bear in mind that everybody is a patient at some point. And when you realise about the needs of the adult patients and of course the children and the young people, you see the benefit to advocate for being sure that they are part of any research project that will be addressed to investigate and to improve their health.

• Tom

  And Begonya, just to be clear, this is something you started doing at a very early age. Could you tell us why that was?

• Begonya

  Yeah, in my case, William, that I'm working now as a professional in the field. I'm the caregiver of my brother. He has cerebral palsy. He was born with this condition. And I know from my personal experience and in first person what are the needs of the caregivers. And I have been involved before to work at Sant Joan de Déu Children's Hospital in several patients' organizations support and to move forward the capabilities, any expertise and the skills that patients need to be part of research.

• Tom

  And Thomas, let me turn back to you. You mentioned you were diagnosed when you were very young. Can you remember how medical professionals spoke to you then? And can you remember examples of them really getting it wrong, perhaps, when they spoke to you? And could they perhaps sound patronising?

• Thomas

  Yeah. First of all, I should mention that respect for autonomy is something that more or less everybody agrees on, regardless of the age of the patient, but getting it right is something very different. I have to say though, my direct care team were more or less fantastic. Having a disease like cystic fibrosis is a complicated emotional thing. There's no two ways about it. My specific situation was complicated by the fact that my dad is a GP. So when I was younger, I have very clear memories of my doctors talking to my dad, even when I was 12 or 13, which I feel frustrating that I did not understand what's difficult or awkward about that fact. So my care team were great, and right now, at age 35, it feels like family. I have a lot less to do with them than I used to. But the issues came up when I was particularly unwell, when I would need supportive care from people like... urology surgeons and I remember one surgeon complaining to me that my patient notes were too sick too heavy there's too much kind of information for him, and i just think, you know again, you look back as an adult and you understand why that's inappropriate but at the time you just kind of feel guilty and responsible for it which i can't really explain that. You know i suppose you're naive and I think so much of advocating for your own interests when it comes to your health is learning from experience. So ultimately, it's led me to a better place for empowerment. But those lessons are difficult.

• Tom

  Thanks for sharing that. And Begonya, does some of what Thomas has been saying sound familiar to you?

• Begonya

  Yeah, of course, this is one of the challenges that we face in pediatrics, the involvement of the patients in the decision-making process, because as adults we think that we have the right perspective, the right capabilities and responsibility to take decisions on behalf of the children. But this is not the right approach because probably what matters to the children about their expectations or their needs, probably it's a different perspective from the parents or other caregivers or also the professionals. And something that we are working hard in terms of advocacy is to recognize that children and young people, they have the right to contribute to any decision that matters their health and we need to facilitate the right means to listen to them. And of course clinical trials is an area in which we need to listen to them and you know it's mandatory, the legal requirement to ask, they are sent of them to be part in a research project. But still it's an area that it sounds very familiar for me because it's a lot of work still to be done because we take for granted many things on behalf of the children.

• Tom

  And Begonia, as you mentioned, you're a patient advocate. How do you get children involved in the process and what sort of information do you get from them?

• Begonya

  We try to involve children and young people if it's feasible at the same age in which is a legal requirement to be involved in the decision process to participate in a research project. Of course, they are naive in science, clinical trials and all this stuff. And from the perspective of the professionals that we are working in this field, in many European children's hospitals across Europe. what is really important for us is to educate, first of all. We need to empower them in the field. And secondly, work with the right methodologies that make easy the process to involve children and young people. Listen them. Usually when you listen to the patients, and of course not only the children and the young people, also the adult patients, the requirements and the needs that they have in regards to research are feasible. And what we need to do is also help to change the mindset of the professionals involved in the design of clinical trial protocols. Because at least in pediatrics, usually we work with protocols that initially were designed for adults, and it's so difficult from the side perspective and from the professionals to really execute these trials with pediatric patients because it's another world. And something that also we need to take into account is that it's not only the children, the one that is involved in the trial, it's the whole family. And I think that, yeah, it's very important, this tandem between the empowerment and the right methodology to facilitate, to get their feedback and their experience in the clinical trials.

• Tom

  And Thomas, just casting your mind back again to when you were a child and a young adult, this must have meant considerable interruption to your education. And I'm just wondering, looking back on it, how well do you think you coped?

• Thomas

  Well, I coped with it very badly at times. One of my regrets is that I lived with shame for so long. I wish I didn't because it manifested in my interpersonal relationship. And how I look back now as a 35-year-old man to when I was between, I don't know, 16 to... 22, I look at myself as a weak person masquerading as a strong person. And, you know, the difficult thing about being unwell with a disease like cystic fibrosis, when you are often 80 miles away from your friends and your school, is, especially in a place where none of your friends can drive, you know, it's an incredibly isolating experience. You miss out on a lot of formative experiences. And cystic fibrosis, along with many other diseases, test your relationship in ways that they're not designed to be tested at an age when you can handle the emotional fallout of those relationships breaking or fracturing or sort of malfunctioning. My only therapeutic breakthrough came when I applied commitment and consistency to what I do. Relatively speaking until recently, my medication regime has not changed at all how I apply it by taking the medications when I'm supposed to, taking what I need to take, when I need to take it, and exercising has really changed my life. To be perfectly honest with you Tom, right now I'm very happy. I'm working out, I'm really passionate about and I can't say the same for a lot of people at my age.

• Tom

  Thanks Thomas. And Begonya, just listening to what Thomas was saying about the phases he went through from being a child to a young adult. It really highlights one of the challenges of working with children because it's a mistake, isn't it, to think of children as just one group. And the way you speak to a 16-year-old is completely different to how you speak to a 10-year-old, isn't it?

• Begonya

  Yeah, this is correct. Sometimes we think that children and young people, as you said, Thomas, it's only one group, but this is not the real world. We have from, you know, newborns and also we work to involve the parents in this case to represent their rights and to listen to their needs. But also we have children, we have, you know, teenagers, and it's a very diverse group of patients and with different needs. But in any case, listen, Thomas, what I just remember is that. The challenge, it's not only one, of course, there are several, but the cross-cutting challenge that we need to work on is to really design pediatric clinical trials and things, which are the needs of these children and young people according to their age, because still they are children and young people, they are in school, they deserve to go out with friends. And sometimes when we design these studies, it's the children in the hospital or at home, and that's it. No social life, no way to... to manage or to deal the school with research. And this is something that it's most, you know, it's really common. Sometimes we don't realize about the pressure that we are, you know, putting to the children and to the family on top, of course, of the standard of care. That in some cases also it's not easy to deal.

• Tom

  Thanks for that, Begonya. And Thomas, just going back to what you were saying about what you've been through, and I'm wondering what made you want to get involved with patient advocacy? And can you tell us a bit about what that actually involved?

• Thomas

  Yeah. Now I found advocacy, looking for public engagement opportunities for various non-profits and charities and stuff like that. It gives me goosebumps thinking about it. When I did my first ever thing, when I had my first ever opportunity, I went to London. It was completely unpaid, but I connected with an organization called Genetic Alliance. There was all kinds of people there. They could be, you know, they could have, they could be leukemia advocates, diabetic advocates, people with cystic fibrosis that are supportive, you name it kind of thing. And it was the first day 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. Thank you. It just simply made sense. Right now I wouldn't change a single thing about it. I'm grateful to be completely honest. The work why I do at 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 to connect that startup to the patient community. It could be helping Servier to design hybrid decentralized trials. It could be something like connecting the inside of a building. like any research campus, with a patient-centric mindset.

• Tom

  Just picking up on the issue of support and support groups, because in other editions we've talked about how important they are, do these groups exist for children and how do they work? Begonya?

• Begonya

  Yes, there are different kind of ways to involve children and there are already established groups of patients that we have trained and educated specifically to be involved in health science projects. The name of these groups are young persons advisory groups. At Sant Joan de Déu we have one with the name Kids Barcelona. It's our youth council and we met with them once per month. But at the European level there are many other groups more than 30 and together we work in a unique network. The name is the eYPACnet and we work together in this collaborative project that ensures that also we are able to involve children and young people in research. We get also the perspective of diversity because every country has different standards of care. There are many factors that also are part of the decision process of children and of the acceptability to be part of research. And for us work at the European level, it's the great way to try to replicate the same approach that a clinical trial can have, but in this case with activities of patient involvement.

• Tom

  And Thomas, you were saying earlier about how as you got more mature, you accepted your reality more, you came to terms with your condition. And I'm just wondering, when you were a child, was there perhaps not quite so much support around?

• Thomas

  It's definitely a combination of that. You know, I think the conversation on mental health and accepting help and being publicly visible in your acceptance of help was, it just didn't really exist in the sort of early 2000s, if you know what I mean. It was... At the time, emotional support or any sort of connection to community was for severely mentally ill people. That was all that existed. It was very binary. It was very black and white. Right now, it's not the same. I have to say, when it comes to support people with chronic conditions or rare disease, or significant for health in any way, it's more of a blind spot, which is actually half the problem. Because the other half of the problem is for people like my parents'age, my parents' generation, who both my parents are in their early 60s now. So you could signpost help them, support to them all day long, but getting these people to accept it, that's a completely different conversation unfortunately. So it is out there, it's not as established as direct support is at the moment, but actually I think the whole conversation on mental health is generally doing towards people to being willing, ready and able to accept their job into their life.

• Tom

  Begonia, what about you as a primary caregiver? Do you need support and is that support available?

• Begonya

  Yeah, yes, Thomas, we need support because dealing with a relative with a health condition, it's not easy. As you can imagine, some of these conditions are degenerative, and it means that the dependency, the needs, the time to provide care to your relatives will be more complex little by little in the future. In some organizations, they are taking care of our relatives. There is this psychological support. But it's not a common or standard practice because sometimes we think about health conditions and we think about healthcare, but we forgot the psychosocial dimension of health. And of course, we forgot the caregivers or other kind of relatives that can be involved taking care of the patients. It's a huge need. And also, I can mention from my professional experience that it's a request from the parents because in some cases, these children are involved for many years in a clinical trial. Probably they started their participation when they were young, but at the end of the trial, probably they are teenagers and for them it's not easy to deal with this. And also they see things, they see if they are in good shape or not. And it's, you know, really overwhelming for them. Yes, the answer to the question, yeah, it's that we need support, but sometimes it's not easy to access or it's not provided to all of us.

• Tom

  Thanks, Begonya. And Thomas, is there anything you'd like to add to what Begonya was just saying?

• Thomas

  Absolutely. It might feel uncomfortable, it might feel weird, but it will be the best thing you ever do. I think that finding your community, regardless of what it is, is really the key. It's transformative for me, and it will be transformative for absolutely anybody that's struggling with something, regardless of whether it's rare disease, being a carer, you name it. Finding your community will transform your life for the better.

• Tom

  We're coming to the end of this podcast but if there's a parent listening who's struggling to cope with a young person in their care is there any advice you'd like to offer them? (Begonya) Yes, one advice, one golden rule is always get in touch and connect with other peers other parents. Sometimes there are patients organizations and it's easy to connect. In other cases also we are providing sometimes support programs and groups at the hospital level, but it's so important to have the opportunity to speak the same language because every disease is different and the symptoms and the opportunities, there are many things around that you need to share. And of course, the only ones that easily can understand you are your peers. For me, this is a golden rule that sometimes it's also challenging for the parents and at hospital level, we facilitate these connections with patients' organisations. And Thomas, what are your words of advice for someone who's struggling to cope in their capacity as a carer for a young person?

• Thomas

  I would say find your community. And also, you can't, it sounds trite, but you can't offer an empty cup. You have to take care of yourself so that you can take care of other people. And that might seem difficult for people to accept because, you know, you might be thinking, well, I have to look after this person who has significant needs. You really need to, you know, it's a long game. It's a long game and you have to... make the time if you can make the space to look after yourself, be kind to yourself so you can, you know, be there long term and do as good a job as possible.

• Tom

  Okay Thomas, you've had the last word, that's all we have time for. Thank you both very much indeed Begonya and Thomas, thank you for being so generous with your time and I'm sure that what you've told us is going to be really helpful to people who've been listening.

• Begonya

  Thank you Thomas.

• Tom

  Well thank you both again and thanks to you for listening, we hope to have you with us again very soon for another edition of The Patient's Side of the Story.

• Voiceover

  Patient's Side of the Story. Stories by Servier Saclay Patient Board.