eCAN Bites is a podcast that gathers interviews with some of the healthcare professionals that have participated in the eCAN pilots. In four episodes we will try to dive into their experiences. How was to be involved in this study as a healthcare professional? What’s the patients’ feedback? How could this project change the current healthcare ecosystem in Europe?

In the fourth and last episode of this podcast, we’ve talked to four psychologists, one physiotherapist and one primary investigator. They have shared with us their reflection on these clinical trials. After all the work that has been done, now it is time to collect their feedback to start thinking about future actions. Their experience not only guide our next steps, but also help us to understand the main challenges and where our efforts are most needed. In this occasion, we’ve interviewed Vasiliki Holeva, from Greece; Sofia Adão da Fonseca and Magda Oliveira, from Portugal; Orsolya Hovart, from Hungary; and Artemis Komatina and Constantina Palala, from Cyprus. We invite you to press play and listen to their reflections on their whole experiences.

PODCAST TRANSCRIPTION

Elisa Piñón (00:05) 

Hello and welcome to eCAN bites. My name is Elisa Piñón. I am the Communications Officer for eCAN Joint Action and your host for today’s episode, the last of this series. 

We’d like to start the last episode of the eCAN bites by thanking all the health care professionals who took their time to talk to us and bringing the eCAN experience closer to our listeners.  

Today we will explore the take-home messages these healthcare professionals highlight from their participation in this transnational project. For this last episode we’ve invited six healthcare professionals from across Europe. We have the pleasure to talk to Vasiliki Holeva, from Papageorgiou Hospital of Thessaloniki in Greece; Sofia Adão da Fonseca and Magda Oliveira, from the Portuguese Institute of Oncology in Porto, Portugal; Orsolya Hovart from the National Institute of Oncology in Hungary; and Artemis Komatina and Konstantina Palala from the Cyprus Association of Cancer Patients and Friends. 

Thank you for being here today and let’s get started. 

It’s so nice to have you here, Vasiliki. You are a clinical psychologist and worked with breast cancer patients, right? How do you value the experience as whole, taking into account the Greek context?   

Vasiliki Holeva (01:30) 

Right. It was definitely a useful experience for us, because we are under a new technological world, which was very easy to adapt and we felt that we managed to help patients that we couldn’t help otherwise, due to their condition and the severity of their illness. So my experience is positive, definitely positive. 

Elisa Piñón (02:06) 

The European Union is so diverse that we need to make sure all countries have equal opportunities to access these services. Does something similar happen in other contexts? Let’s ask our Portuguese colleagues. Sofia, Madga, you are physiotherapist and psychologist respectively in IPO Porto. What’s your opinion on the eCAN pilots? 

Sofia Adão da Fonseca (02:27) 

I think it is a really good and interesting strategy for following the patients that can’t come in person. I think this experience was really useful for us, as clinical team, as for the patients, as they showed us how they were doing with the treatment. 

Elisa Piñón (02:57) 

And yours, Magda? 

Magda Oliveira (02:59) 

I think when we look at it from a broader perspective, looking to the pluses and the minus, I think the balance it is very positive. It was a positive experience for me. I was challenged with something that need the development of your skills. And it was very, very positive that the patients were included in these pilots. We adopted a lot of games and are very happy with their participation from the start until the end. So, I think it was a good opportunity for all of us, the starting point for thinking of reflections and perspectives that these tools can bring to all of us. Thank you for the opportunity.  

Elisa Piñón (03:57) 

The pleasure is ours, Magda. None of that could have been possible without your commitment. I’m sure the Hungarian colleagues put the same dedication in the project. You, Orsolya, were the primary investigator from your centre in this project. How do you evaluate this experience? 

Orsolya Hovart (04:14) 

The eCAN Project was a really good chance to convince the patients and the healthcare professionals that the e-tools can improve the treatment and the rehabilitation of cancer patients, and the I’m quite sure that this will be the way for the future, and we both have to accept it and use it widely. 

Elisa Piñón (04:41) 

Thank you very much, Orsolya, lastly I’d like to get your impressions Artemis and Constantina. You both work in the Cyprus Association of Cancer Patients and Friends. What are your main highlights after participating in this project?   

Artemis Komatina (04:57) 

I think it is important to really find ways to inform and educate and support healthcare professionals. I know in some countries technology is widely used, but in Cyprus it is a lot more limited. And I think in order to promote technology within the healthcare settings, we really need to start with our healthcare professionals. It’s not a normal part of our everyday practise, so it’s something that we kind of need to get familiar with and get to know well and we need to appreciate its benefits in order to help our patients embrace the change and the benefits of technology. 

Constantina Palala (05:44) 

Yeah. Well, basically our approach will affect the willingness of the patients to incorporate like technology in their lives. So we need training. 

Elisa Piñón (06:00) 

We are taking notes, Constantina. While doing these interviews, I’ve heard that more than once, so we definitely have some work to do in that sense.  

Thank you so much for joining me in today’s episode. This was the last of our series, I hope you enjoyed the four episodes that are available on our website and hopefully you better understand the intricacies of this exciting project after listening to eCAN bites. We definitely do it. We’ll keep you posted on our very last news. 

Co-funded by the European Union. Views and opinions expressed are however those of the author(s) only and do not necessarily reflect those of the European Union or HaDEA.                                                                       Neither  the European Union nor the granting authority can be held responsible for them.

eCAN Bites is a podcast that gathers interviews with some of the healthcare professionals that have participated in the eCAN pilots. In four episodes we will try to dive into their experiences. How was to be involved in this study as a healthcare professional? What’s the patients’ feedback? How could this project change the current healthcare ecosystem in Europe?

In this second episode, we’ve interviewed one of the primary investigators of this research, one physiotherapist that worked with breast and head and neck cancer patients, and two clinical psychologists that offered online therapy to cancer patients. We want to share the patients’ experiences through their voices and these four professionals have helped us to build a clearer picture on what patients needed and expected. We invite you to press play and listen to their experiences, you might be surprised by the importance of the very small details when doing a transnational study like this one.

PODCAST TRANSCRIPTION:

Elisa Piñón (00:06)

Hello and welcome to eCAN Bites. My name is Elisa Piñón and I’m a communications officer for the eCAN Joint Action and your host for today’s episode. For this second episode, we are going to explore some of the feedback that patients have given to the healthcare professionals who followed and monitored them during the eCAN pilots. For this purpose, I have with me today Meghan Carter, from Ireland; Orsolya Hovart, from Hungary; Sandra Birbilaitė, from Lithuania and Constantina Palala, from Cyprus. Thank you for being here today.   

Let’s start with you, Meghan. Could you tell us a bit about yourself and your role in this project? 

Meghan Carter (00:51)

Sure. So my name is Meghan Carter. I’m a senior physiotherapist in radiation oncology, and I’m based in a hospital in Galway in the West Coast of Ireland. 

Elisa Piñón (01:03)

So, within this project you were in charge of working with breast and head and neck cancer patients, right? I guess they all have different points of view, but is there a common experience that you could share with us today? 

Meghan Carter (01:15)

They were very relieved that they were getting some sort of follow up and that somebody was keeping an eye on them because. Obviously they have their medical follow-ups and they’re, you know, due for scans or some of them were due to start radiotherapy or you know different things that were going to be potentially in a few weeks or months, so it was good for them to have a clinician check in every week just to monitor, see if they’re OK. They could ask us questions that weren’t always related to physiotherapy, but just in general, medical questions that we might be able to guide them to the right person, so feedback was that it was good to have somebody there to chat to and to obviously keep an eye on symptoms like lymphedema or if they have any other musculoskeletal problems and then the only kind of negative feedback really was patients that were just disappointed from being in the control group. 

Elisa Piñón (02:11) 

Yes, as a patient, it is hard not to have any expectations when you get involved in this type of study, I guess. But I hope they know how useful their role is as well. Thank you for your insights, Meghan. 

Meghan Carter (02:23)

Thank you. 

Elisa Piñón (02:24)

We go from Ireland to Hungary, we have the pleasure of talking today to Orsolya Hovart. You work at the National Institute of Oncology in Hungary and were primary investigator in the eCAN pilots. So we can say you were involved in the whole process, from patients’ enrolment until the end. Did you have the chance to get to know the patients’ experience? Would you say they were happy with this process? 

Orsolya Hovart (02:49)

They were really happy to get into the intervention (group), because it was much more easier. We had patients from all over the country, so there are quite a lot of patients who have to travel a lot and to get to the Institute, and also we have some patients who have little children and parents who care about them. So it was really good for them that they got into the intervention (group). And for the psychology, they were really happy that they get psychological treatment for two months because psychologists have quite a lot of patients and usually they meet with them just five times, and not for two months long. Also they get more treatment, so they were also very happy. 

Elisa Piñón (03:51)

Thank you Orsolya. Your insights offer us a glimpse of the effects patients perceived while participating in the intervention group. And now I would like to dive a bit into the feedback patients provided with regard to psychological support. For that Sandra Birbilaitė is also with us today. She is clinical psychologist and psychotherapist at the National Cancer Institute of Lithuania. So, in the first episode we had here Marija Turlinskiene, she is your colleague, and she gave us some food for thought in terms of the eCAN pilots. Now it is your turn, Sandra. Do you consider patients were satisfied with their participation? Should we improve something for the next time according to their feedback?   

Sandra Birbilaitė (04:33)

Yes, patients like the idea of participating in this. But we already talked with Maria about app improvements. We talked yesterday, and it can be that patients in the app can receive not only questionnaires but maybe some self-help materials, about depression, about anxiety, medicine, something like this. And if it’s related to rehabilitation (…), maybe some exercises can be involved in the app, so they can really do what doctors… 

Elisa Piñón (05:26)

Yes, this app enables them to do what’s recommended by the doctor at any time during the rehabilitation process, so it could change according to their needs, which is helpful for the patient. Thanks a lot, Sandra, for your insights. Lastly, we would like to talk to Constantina Palala today. She is psychologist at the Cyprus Association of Cancer Patients and Friends, and you have had several online sessions with patients. Did they express how they felt during this whole process? 

Constantina Palala (05:54)

I think that the fact that their engagement was monitored by us, meaning the measurements from the watch and the questionnaires make them feel safer, like that someone is looking after them. The feedback was positive, and I can say that some of the sessions were actually very good through the online platform. I think they felt safer and some of them felt more comfortable expressing themselves even more. 

Elisa Piñón (06:36)

Yes, some people are sometimes reluctant to adopt digital tools when it comes to therapy, but it works for others, and I’m happy to hear that your patients were able to express themselves freely. Thank you so much for your participation today. Thank you all. Listening to patients’ experiences through your voices has been so insightful and we have taken note of some of the pending tasks that we need to accomplish to satisfy patients because we know that they are always first. Have a good day and see you in our next episode on implementing eCAN experiences in daily life scenarios. See you soon.

Co-funded by the European Union. Views and opinions expressed are however those of the author(s) only and do not necessarily reflect those of the European Union or HaDEA.                                                                       Neither  the European Union nor the granting authority can be held responsible for them.

Equity and digital transformation are not always perceived as two sides of the same coin, and although there is an undeniable change in how we behave and interact in this technologically driven World; it is not less true that digital tools offer an incredible range of innovative solutions that can be helpful to reduce inequalities in different fields. 

The transformation healthcare systems are undergoing is intrinsically linked to the incorporation of digital solutions. But there are still some doubts on how this should be done, and the fact that research shows that telemedicine can close healthcare gaps is not enough to fully embrace digitalisation yet.  

In the specific field of cancer, research efforts are focused on consolidating telemedicine as a common practice across Europe, enabling equal access to care. The current scenario reveals that there are gaps in cancer care depending on where the cancer patient lives, whether urban or rural areas; their socio-economic status; the population group they belong to; and how they identify. These are what we know as social determinants of health. 

Inequalities based on our ZIP code

15500 and 06240 are ZIP codes from Fene (north-west Spain) and Sjøholt (west Norwegian coast). Despite being 2320 km apart, these two villages have something in common: both are rural areas where access to cancer care differs from the one in big cities. Mónica Fernández, from Spain, and Nils Petters Sjøholt, from Norway, as cancer survivors, know that for a fact. They are well aware that when cancer touches someone’s life in these territories, distances become problematic, since patients often need to travel long distances to have access to treatment, psychological support and rehabilitation processes.  According to Mónica, “living in a rural area ensures quality of life, but healthcare services close to my place should be better equipped”. She was diagnosed with breast cancer in 2021 and had to travel 40 km to receive radiotherapy for three months, “although there are people from my region that need to drive up to 100 km to get the same treatment”, she adds.  

Nils Petters’ experience has some resemblances. When he was first diagnosed with prostate cancer in 2003, he had to go to Trondheim to get surgery, 260 km from his hometown. “For three years I went to Trondheim for control visits every three months”, he explains. Later on, when he was diagnosed with appendix and skin cancer, he received his treatments a little bit closer, 40 km from Sjøholt. “People living in an urban area have things easier”, he points out. 

The evidence supports his statement. Several studies on cancer care and inequities reveal that cancer patients living in rural areas experience health care disparities and poorer clinical outcomes than their counterparts in urban areas. One useful fact to understand where these inequalities come from is that the “average road distance to essential services is much shorter in urban areas compared to rural areas”, according to EU data, and that may affect almost 1 out of 3 people who live in the countryside in the European Union. For instance, in remote rural areas, the average road distance to the nearest doctor is almost 21.5 km, compared to 3.5 km for people living in cities.

In this sense, Vittorio Castaldo, project manager of the eCAN pilot projects and researcher at the Regina Elena National Cancer Institute in Rome, states that the greater the distance and the travel time, the higher the chances of neglecting patients’ needs. Offering continuous monitoring and psychological support through digital tools “empowers patients and helps us to ensure that patients who live far from medical centres receive equal care than those who live in urban areas”, Castaldo adds. 

A network of support 

Neither Mónica nor Nils Petters received psychological support. In her case, Mónica did not apply for it, although she thought about it. “When I got my diagnosis, I did not react well. I knew I had a lump, because I could touch it, but after tests, they found five lumps. Doctors finally decided that surgery was the best way to tackle it, which was not my preferred option. That was when I felt the World was falling apart”, she explains.  

Thanks to her family and friends’ support, and also because “cancer was never a taboo” for her, she could mentally deal with it. However, she stands for “providing psychological support to everyone who needs it. Cancer processes are not the same for everybody and depending on the sequelae, patients may or may not require it. In my case, I was a young woman who also did not suffer so many corporal changes. When your physical appearance changes a lot, I think it is harder”.  

When Nils Petters recounts this period of his life, he relies on humour. “They [doctors] used to remove small pieces of my body from time to time”, he explains while laughing. For him there is a paradoxical truth: “the key to fully recovery from cancer lies in early detection”. In the case of prostate cancer, active surveillance and the use of the appropriate early detection tools can make a big difference in the possible outcomes of a patient. 

In this case, Nils’ wife was his psychological support, because by that time it was overwhelming to find this kind of help and reliable information in public services. He acknowledges the importance of providing psychological support “to anybody with a cancer diagnosis, especially after treatment”. However, accessing these services is not always easy. “If you need a therapist, you have to go to your regular doctor, and s/he needs to apply for it. When I was a patient, it was not certain that you’d get it, and there was a long waiting list because there was and still is a workforce shortage”, he points out.  

Neither of them has used telemedicine services, but both agree that if they had had the chance to use digital tools, they would have tried them. Mónica notes that “digital tools and communication are paramount, but you also need patients to have some digital literacy”. Nils Petters believes that it would have been much easier for him to have had these tools at that time. 

The role of telemedicine 

In fact, technology transforms the way patients face cancer. “Distances become shorter”, says Efthyvoulos Kyriacou, the head of the Telemonitoring team at eCAN that works at the Cyprus University of Technology (CUT). “A patient might need to talk to his or her physician or psychologist and thanks to telemedicine they do not need to wait three weeks for an appointment. You can have that on a more regular basis through telemedicine services”. Digital tools enable communication, and the opportunity to connect the right clinician to a patient, instead of moving the patient around. “This is especially relevant for countries that have dispersed population in large rural areas”, argues the CUT’s professor. 

At eCAN, research efforts are dedicated to developing mobile apps, web-based interventions or the use of wearables for remote monitoring of pain, anxiety or quality of life. According to Kyriacou, it was after COVID pandemic when “the healthcare community started appreciating the opportunities and usefulness of tele-support and telemonitoring, perhaps also because new generations are digital natives”. 

His perspective coincides with Castaldo’s view. The Italian expert believes that “opening up this new scenario for telemedicine is useful to create a more sustainable and effective healthcare era”. However, “it is relevant to keep in mind that telemedicine is not replacing in-person visits, rather it is a parallel tool useful to overcome some issues related to cost-effectiveness and remote access to care”, he concludes.    

Navigating paths towards equality: where to focus? 

As is often the case, innovation outpaces legislation. Digital tools are available, but the legislation enabling their operation is yet to catch up. However, it appears to be closer than ever. After years of documents bouncing from one institutional desk to another, the prospects of finally reaching an agreement on a European Health Data Space (EHDS) are promising. 

“The EHDS will be the pillar that sustain health data management, and the guide that defines how the General Data Protection Regulation (GDPR) should be handled across the European Union”, Kyriacou explains. The document is grounded in the 2022 proposals of the European Commission, and both the Parliament and the Council have reached their own views on what the final text should contain. The two are now entering negotiations with each other, involving the Commission as well, with the aim of reaching a final agreement that can be enacted into law. 

Integrating digital tools into clinicians and patients’ daily routine is also a matter of persuasion and trust-building process. During the recruitment phase for the eCAN pilot projects, Vittorio Castaldo has seen both negative and positive reactions. Whereas some patients feel reluctant to use it because they “want to have this eye-to-eye conversation with the clinicians, to catch their gestures, etc.”; there are others that “are happy to receive tele-rehabilitation care for breast, and head and neck cancer, and mainly tele-psychological support”. In the trust-building process, Mónica Fernández also highlights the importance of “mastering the art of communication”. “Healthcare professionals need to learn how to better explain what is happening to us and encourage us to get psychological support. They cannot force us, but they can stimulate us”, she points out.  

Digital tools are available, EU regulations are on their way and the ability to convey the right message to the proper actors is a never-ending task. Navigating the journey towards equitable access to healthcare presents ongoing challenges, not only in the realm of cancer care but also in its prevention. What seems to be unmistakably evident in this intricate process is the growing influence of telemedicine, now asserting its position in the core of European healthcare systems, akin to a respected member at the family dining table. 

Co-funded by the European Union. Views and opinions expressed are however those of the author(s) only and do not necessarily reflect those of the European Union or HaDEA.                                                                       Neither  the European Union nor the granting authority can be held responsible for them.