An Interview with Susan Evans Axelsson from Prostate Pioneer
Susan Evans Axelsson, Clinical Coordinator joins OnFocus from Prostate Pioneer, a European consortium aiming to transform prostate cancer care by maximising the potential of Big Data.
Please find below a written transcript of the interview, and call The Focal Therapy Clinic today to discuss your prostate cancer treatment options: 020-7036-8870.
Enhancing diagnosis and treatment for better outcomes for prostate cancer
Clare Delmar:
Hello and welcome to OnFocus brought to you by The Focal Therapy Clinic, where we engage with issues facing men diagnosed with prostate cancer that are little known, less understood and often ignored. Prostate cancer is now the most commonly diagnosed cancer in the UK, and with this somber fact comes a multitude of challenges and opportunities. I’m Clare Delmar. Joining me today is Susan Evans Axelsson, clinical coordinator for Prostate Pioneer, the European Network of Excellence for Big Data in Prostate Cancer. It’s part of a European mission to improve health outcomes in health care systems in Europe by maximising the potential of big data. And it’s tasked with transforming the field of prostate cancer care by focusing on improving prostate cancer outcomes, health system efficiency and equality of health and social care across Europe. Susan, welcome and thanks so much for joining me today.
Susan Evans Axelsson:
Hi, Clare. Thank you very much for inviting me on to speak about the Pioneer project.
Clare Delmar:
You know, it sounds incredibly complex and intimidating, and I think you are just the perfect person to try and demystify and to get people excited about it. Because, you know, you and I have obviously been working together and I’ve become extremely excited about it. And I think this is an opportunity to share that and to really communicate to our listeners how big data is really a big, important part of the future of prostate cancer. So on that note, maybe we can open with you just telling me, what is the Pioneer project and what’s your role in it? So that kind of sets the context.
Susan Evans Axelsson:
First, I think I should let you know what Pioneer stands for. It’s a bit of a mouthful. So it’s “Prostate cancer diagnosis and treatment enhancement through the power of big data in Europe”. So, like I said, it’s a bit of a mouthful, but it’s quite important. We aim to transform the field of prostate cancer care. We’re really patient focused. There’s a lot of things that haven’t been addressed that big data can address. And we are prostate cancer based. We’re part of a “Big Data for Better Outcomes” mission. The mission of Big Data for Better Outcomes is to improve health care outcomes in health care systems in Europe by maximising the potential of big data. There’s a few other programs within this mission, its Roadmap, which focuses on Alzheimer’s disease, Harmony for haematological malignancies and Big data for cardiovascular disease. So they see the importance of big data. And I know that your listeners, we really need to understand what big data is in order for you to understand why we need it and how we can use it.
Clare Delmar:
Exactly. Well, first of all, just before we dig into that, just tell us really quickly what your role is. So for our listeners, you’re based in southern Sweden and you’re coordinating a group really across Europe, correct?
Susan Evans Axelsson:
Well, it’s all over the world, actually. We’re a large consortium. We’re I think thirty four public and private stakeholders. So that means we are academics and industry working together. We want to make everything transparent and available. And we work closely to identify holders of prostate cancer based data sets. So my role within Pioneer is within work package three. It’s data accessing and sourcing. What we do within work package three is we identify these high quality data sets and then we start a dialogue with data holders. So, for instance, if your patients are part of a clinical trial, a hospital that’s collecting the data, we go to this data holder and we say you have this great data set we think would fit very nicely in with the Pioneer platform. However, it’s hard for people to let go of their data as well. You know, you work for years to collect this data and you want to make sure that it’s used for the benefit of the patient. So my role is to start this dialogue and to help the data holders understand the importance of their data when collected with other data sets, and also to feel comfortable with sharing the data and know how it’s shared and how it’s used.
Clare Delmar:
So that’s pretty clear, I think. So let me come at that from two sides. So what kind of data are we talking about? Can you give us some examples of what kind of data we’re talking about?
Susan Evans Axelsson:
Well, it’s all sorts of data. It’s from clinical trials, from industry and from academics. It’s from prospective, retrospective, single and multi institute studies. For instance, we collected from a company, a small biotech company here in Sweden, and it was them holding the data and collecting the data. But they had sites all over the world. So we have worldwide sets that have worldwide data and we have sets that are specific to an area. We have like the Malmo data sets are specific from Malmo. So it’s that type of data.
Clare Delmar:
OK, so you’ve defined…
Susan Evans Axelsson:
Imaging data, genomics data.
Clare Delmar:
OK, so that gives me a bit more so it’s obviously specific to areas, but more important, specific to types of let’s see how you actually gather information on an individual patient, whether it’s from an image or from a drug.
Susan Evans Axelsson:
Yes. And from a quality of life. Quality of life is very important.
Clare Delmar:
The ultimate source of it is the individual patient who has to give consent for his. We’re talking about prostate cancer, his data to be to be used and to be shared. Has that….
Susan Evans Axelsson:
Absolutely.
Clare Delmar:
Has that been a problem or an opportunity?
Susan Evans Axelsson:
Well, when we collect the data now, we have to make sure that everything was approved before. So patients have already approved their data to be used for this. And that is extremely important that when you are going in for surgery or when you’re diagnosed with prostate cancer, if they say maybe you have a cancer that does not need a therapy right now, you’re going to do watchful waiting or active surveillance that can also be set in a database and that can help us to understand how cancer evolves over time. And so your doctor may ask you, can we use your data for this type of project or can we use it to incorporate with other data to help build and get a picture of how the cancer evolves? And that helps us to better understand, because that’s a big problem. We don’t actually understand prostate cancer. We don’t understand the disease. So we can use big data, we can use data from this clinic, and this clinic, and this clinic and put them together to be able to improve diagnosis and the treatment of prostate cancer and to better understand the disease.
Clare Delmar:
OK, that’s interesting. So the big actually refers to the size of these datasets, as you said, and you’re doing something slightly unusual by putting these all together.
Susan Evans Axelsson:
Yes, it’s important not to base a clinical recommendation on one data set because you have different populations. A drug could affect African-American men, different from white men, different from Asian men. You might not see this difference if you’re just using one data set. It might not be apparent, but if we set and we can harmonise and we can put three different data sets, four different data sets, five different data sets together, we’ll be able to focus what we’re doing. We’ll be able to really contribute to overcome the differences of treatment for men with prostate cancer. We need to stop the current underuse of effective drugs and overuse of ineffective treatments. And we can do this by using big data to really get the bigger picture of what’s going on in men.
Clare Delmar:
So your work actually complements the clinical trials that are already out there for drugs or devices or technologies?
Susan Evans Axelsson:
Big data is similar to real world populations, whereas when you have clinical trials, they report on streamlined cohorts. So we can add all this together, but we really need to get the real world data. We really need to see what’s happening with everybody. And you get this by putting this big data together. We want to stop using drugs that aren’t working. We want to start using drugs that are working. And we need this from men across Europe, not just in Sweden where I am, because we really need to standardize how men are treated. Even here in Malmo, a man is treated, can be given a different treatment therapy than a man in Gothenburg. It’s unfortunate that we don’t have standardisation in treatment plans. A doctor has his way. He treats and you have doctors that are more into research and more up to date. And you have doctors that say “this has been working for years and this is what I’m going to stick with”. We need to standardise it. We need to be able to guide guidelines and help give the best therapy for men.
Clare Delmar:
So let’s look at the concept of evidence, which is what clinical trials obviously seek to produce. I mean, are you suggesting that by using these big data sets, you can take some evidence that’s been generated from, as you say, a cohort, a carefully selected cohort, and then use that to actually standardize treatment or standardise the outcome of that trial?
Susan Evans Axelsson:
We can help to guide, help to dig through the crap. You know, the statistical value of the data is increased when you add more. And this is a benefit for men. But that’s why we are a consortium with academics and industry. We work together. Within the Pioneer platform already we have data sets from academic and from industry, which is quite nice because we can really see what’s going on. But you know that, you especially, you have this podcast, you really try to give the men the information they need. I know you do, you try to get it out there, you try to inform the men as much as possible. And prostate cancer is something that can be cured if caught early enough, if caught while it’s still confined within the prostate. However, unfortunately, it’s taboo to talk about prostate cancer, and it’s still the second leading cause of death among men. So we know that prostate cancer is a major health issue and it’s got many unmet needs. We know that there is insufficient knowledge on the risk factorsand patient characteristics. We know that we really need to integrate real world clinical data into how men’s disease is classified and their care pathways. We’re missing the standardisation of the outcomes.
Clare Delmar:
OK, so and this is where you think by building up these large, voluminous data sets that will help address that?
Susan Evans Axelsson:
Very much.
Clare Delmar:
Yeah. Let me ask you a question. Can you give us an example of some of the research questions or some of the actual clinical questions that the Pioneer teams are addressing and using the big data to help them understand better?
Susan Evans Axelsson:
What we did within the Pioneer, we identified a number of questions covering all stages of prostate cancer, focused on… We were focusing on the various conditions, including screening, diagnosis, risk stratification, which includes like genomic profile, treatment and the complications of treatment. So, and when I say we identified, that means that it was members of the EAU Prostate Cancer Guideline Panel, that’s the European Association of Urology prostate cancer guideline panel and other prostate cancer key opinion leaders. They were contacted to determine the most important questions that they felt were in the field of prostate cancer.
Clare Delmar:
OK, and can you just give us an example of one or two on that list?
Susan Evans Axelsson:
Yeah, well, we have 57 that were identified, but I need to say that once we had these questions identified, then we performed a prioritisation survey among two stakeholder groups and these groups, they were health care professionals, which included pharmaceutical companies, but also, most importantly, were patients with prostate cancer.
Clare Delmar:
OK
Susan Evans Axelsson:
So we know that by involving the patients and all of the relevant stakeholders is key. Helping the patient to be actively involved in designing and prioritizing the research questions so the patients help us to know what they feel is most important with their care of prostate cancer. So it’s not just we popped these out of the air. So it was actually a prioritisation exercise.
Clare Delmar:
And very ground up I can see.
Susan Evans Axelsson:
Yes, we have, like I said it was like fifty seven questions we’ve identified. We have a top five that we’re working to address within Pioneer right now to say let’s test the platform and make sure they work. And we have one that’s focused on what are the relevant tumor specific and patient specific variables that affect prognosis of prostate cancer patients suitable for active surveillance. And this is why we also need patients to agree to be part of active surveillance trials. It’s very important. You might think I’m not going to be treated. It’s not a drug being given to me or anything like that. But this is very important. Another one we’re wanting to look at is what is the clinical benefit for determining patient’s genetic risk profile regarding prostate cancer management, especially in the screening setting? So we need to get all this information. So we really need these genetic based data sets so that we can answer. Can we predict if a man is going to have aggressive cancer? And can we look at the natural history of prostate cancer undergoing conservative management like watchful waiting, you know, or the side effects and local problems or looking between the treatments.
Clare Delmar:
So quite a range, really…
Susan Evans Axelsson:
It’s very much a range.
Clare Delmar:
And I’m beginning to get a sense of how you could use large sets of data to begin to understand that. I mean, is then the actual acquisition of these data sets one of your biggest challenges or are there other challenges as well that you’re facing in making it all happen?
Susan Evans Axelsson:
Yeah, well, I mean, it is a big effort to convert and harmonise large cohorts. It’s a big undertaking. I can break it down a little. Within work package three, my main focus and our main challenge is motivating contributors to participate. When they do clinical trials to make sure they get the right approvals from the patients, so that they can use them and can share their data. We also have to make sure that we satisfy all GDPR and privacy regulations while we have these meaningful research collaborations, we need this to be a useful platform. As a whole, the issue of big data in medical research and in health care systems, it’s a complex ethical issue.
Clare Delmar:
Indeed
Susan Evans Axelsson:
Yeah, it’s complex. They have to make sure that we have consent. We have to make sure we have data privacy, cybersecurity, the social aspects of patient data being used. But within Pioneer, we do take this into account. And for that we have a work package dedicated to ethics, legal and government of data sharing. So we do make sure that patients are protected. We’re not interested in a patient’s name when we do this big data, we do allow data to be shared from the data holder in two ways. You can choose that we anonymize the data and then put it in a central platform to use. Certain countries, certain institutes don’t allow that to happen. So we keep the data with the data holder and we harmonize it behind their firewall so nothing ever leaves. And then we give them the question and they throw out the answer to us. So we do not want to have patients that are scared to share data because we need this data to be able to improve how the patient is being treated.
Clare Delmar:
OK, so what’s your message then, to like if you could get in front of large patient groups, you know, like a case of the prostate cancer communities, what would you say to them in terms of why it’s so imperative that they sign these consent forms and why they should possibly advocate this to their colleagues?
Susan Evans Axelsson:
Well, first, I would have to say, you know, early diagnosis saves lives, so guys stop with the taboo. Talk about your health, get it out there. And when you do talk about your health, you know, when you talk to your doctor, get as much information as you can and tell your doctor you are willing to share the results of what’s happening. You are willing to put your data in a large data platform because these platforms, we have to make sure that this is safe. We have to make sure that it’s effective, that it’s usable. And it’s the only way that we’re going to be able to standardize and that we’re going to be able to get consensus on what is the most important prostate cancer outcomes. We need consensus. We need to identify critical evidence gaps, and for that, we need the men to give us the data to help us.
Clare Delmar:
So, I mean, basically, there’s almost like the beginnings of a movement here. Like patients can actually help each other…
Susan Evans Axelsson:
Absolutely, and that’s why we have patient advocates. At Pioneer we do have a patient advocate groups that are part of Pioneer. Very much. We very much listen to them.
Clare Delmar:
And second quick question, I guess really final question. I mean, so to the extent that patients then understand that sharing their data is more than an altruistic thing, it’s actually something that’s in their interest in terms of their health and the health of their brothers and their friends or whatever. But that is fundamental to, I guess, your whole mission, which is that you honestly believe that by accumulating these large datasets, that is the key to really beginning to understand some of the key issues facing prostate cancer researchers. And you think big data is actually something that’s going to really sort of accelerate that? Is that a fair way of a fair way of describing it?
Susan Evans Axelsson:
Accelerate. Yes, you can say accelerate. I mean,…
Clare Delmar:
Or advance?
Susan Evans Axelsson:
I like advance better. I mean, it’s the only way we’re going to be able to understand the disease. It’s the only way that we’re going to be able to give each individual man the treatment that’s best for him. It’s the only way that we’re going to meaningfully improve clinical practice.
Clare Delmar:
OK.
Susan Evans Axelsson:
Health, economic outcomes. I mean, think of the money saved from a man treated early, than a man who is treated later on in the disease.
Clare Delmar:
Absolutely, I don’t think anybody disagrees with that. I think the issue here is, you know, how your project can really contribute to improving that. And you’ve got I mean…
Susan Evans Axelsson:
It’s evidence, it’s evidence-based data and that’s what we need.
Clare Delmar:
That’s the word that everybody likes. But I also like about chatting with you is that, you know, patients are crucial to this. And if each individual understood why their data was important and gave consent and then sort of advocated this to others, and you’d be sort of over some of the initial challenges here.
Susan Evans Axelsson:
So, I mean, men need to ask questions. Men, they need to be informed. They need to know what’s out there. They need to know it’s possible that they can share their data and can help other people because prostate cancer, a diagnosis doesn’t just affect the man, it affects their whole family.
Clare Delmar:
I think a lot of them do understand that. I mean, I certainly talk to many patients who actively take the initiative and say we really would like to share our experience, you know, whether it’s about a certain diagnostic pathway they went through or particularly if it’s around a treatment.
Susan Evans Axelsson:
That’s so nice to hear.
Clare Delmar:
So this just adds another element to that, that are you aware that by contributing your data, you’re actually doing yourself a favor and contributing to the research? Because I think a lot of people don’t understand that. So, yeah.
Susan Evans Axelsson:
And that’s why I really appreciate you taking the time to get this out.
Clare Delmar:
You know, it’s an important project and, you know, the fact that it’s so collaborative for one thing.
Susan Evans Axelsson:
Yeah, very much.
Clare Delmar:
And I think I mean, that’s interesting. I mean, if you look at some of the recent events, either the vaccine that was announced last week is a really good example of international collaboration…
Susan Evans Axelsson:
Absolutely.
Clare Delmar:
.. and research. So I think this, what you’re doing is, you know, something that’s even broader than that. So I wish you all the best. And I want to thank you so much for chatting to us.
Susan Evans Axelsson:
Thank you very much, Clare.
Clare Delmar:
Maybe we’ll have another chance to do it again with a more specific set of questions. But for the moment, I think you’ve given us some real insight to what big data means and how you can actually use the term big data and prostate cancer at the same time. Never thought I could do that before. So, anyway, thank you so much for speaking.
Susan Evans Axelsson:
Thank you, Clare.
Clare Delmar:
It’s been fascinating and a real pleasure. Links to the Prostate Pioneer Project and a transcript of this interview is available on our website, where you can also access information and insights on living with prostate cancer. Thanks for listening and from me, Clare Delmar, see you next time.