Rare Disease Day and beyond: How can digital services improve the status quo?
Various experts have come together in the Atelier Belvedere to discuss the topic of rare diseases on the occasion of the international Rare Disease Day on 29.02.2020. The discussants brought in the patient, entrepreneur, digital and political perspectives to approach this complex issue from different angles. Shortly after the start of the discussion it became clear that a paradigm shift is needed to tackle such a complex topic and that digital tools play an important role in making patients feel heard and understood.
- Roi Shternin, Health Entrepreneur and Patient Leader
- Martin Verdino, Founder of VERDINO
- Sherin Quell, Digital Marketing Consultant at VERDINO
- Stefan Gara, NEOS spokesman for health, climate and research. Entrepreneur since 25 years.
- Béatrice Verdino, Fondatrice of VERDINO
Health Entrepreneur und Patient Leader
Martin Verdino (MV): Roi, you diagnosed yourself with a disease that is unknown to most people: Postural orthostatic tachycardia syndrome (POTS) after the doctors more or less gave up on you.
Your way from the first symptoms to the diagnosis was very long, as it is often the case with rare diseases. It is often the central message that we encountered while conducting interviews with patients, relatives and doctors. This is not only the case in the field of rare diseases, we also saw this when it comes to psoriasis for instance. Besides there are a lot of obstacles and difficulties that patients have to face.
What are the main differences between the field of rare diseases and other illnesses that are more common?
Roi Shternin (RS): We have a crude criteria in the EU: if a disease affects 5 people out of 10.000 it's a rare disease. POTS for instance affects 170 per 100.000 and is therefore almost meeting the criteria. We play a number game, in which we dismiss thousands of patients. I think we have superstar illnesses (cancer, MS or diabetes). Rare diseases are by criteria rare and the ones in the middle are ignored. Sometimes these people can suffer more. If you have a rare disease there is often at least one center in the world that is researching on it. Whereas if you suffer from one that doesn’t match the criteria you are in the middle and you often struggle to find someone researching on this disease. We have a cynicism problem. I see that there is a huge market even though such a small number of people is concerned e.g in Israel a genetic illness that affect 5 children costs one million dollar. The decision in which disease to invest in order to find a cure is tough. I mean you have to ask yourself „What is life worth?“ And this is almost impossible to answer. If we don’t start to help people and I’m not even talking about the cure but in general then we will lose work force, productivity and happiness.
MV: How would you describe the circumstances in which people with rare diseases live in terms of communication with experts and other patients because there are so few?
RS: I’m noticing a battle going on in the healthcare sector in order to get heard. Patients are fighting for their rights and for being acknowledged, medical staff that is often over-worked is fighting to get more time to undergo a diagnosis. They are often lacking the tools. We are in the middle of a communication crisis. It's not even healthcare but communication between patients and doctors. I think that digital tools are one of the greatest solution in order to tackle this issue. For instance, social media and chatbots can help us to get heard. Besides, I noticed something very DACH (Germany, Austria, Switzerland) specific: it’ shame. Due to privacy issues and shame it's very hard for community leaders to create conversation. People in DACH don’t want to show that they are sick. There is a void between patients, that don’t want to be seen as such, a lack of resources by organizations and the healthcare system. Under these circumstances people with rare diseases are even more suffering.
Sherin Quell (SQ): Don't you think that with social media people can anonymously exchange with other patients about their disease?
From our experience we see that numerous patient organizations use social media, mainly facebook, so that they can create private groups in which people can exchange information about and experience with a certain disease while being anonymous.
RS: Yes, I think that it’s a good idea for patients organizations because on facebook for instance you can create a fake account. Even though we tried it in Austria we didn't see any activities compared to Israel, where we have seen great results. We currently have around 300 active users.
SQ: So, you think that it has to do with the mindset in Austria?
RS: Yes, I am sure that it has to to with the culture. In the mediterranean area people are more open to talk about their diseases. So, in a conversation it can pop up and we give each other advices on how to find a doctor. Or which clinic we went to. In Austria it’s different. People are very polite, they shake my hand but they would never talk to me about their illness. People tend to be more introvert about medical conditions or well-being. I don't talk about people with visible diseases but the ones that are invisible. This makes the discussion about rare diseases really difficult.
NEOS Sprecher für Gesundheit, Klima und Forschung. Unternehmer seit 25 Jahren.
Roi and Martin are discussing the situation in Austria for foreign entrepreneurs and that the barriers are often problematic in order to bring highly-educated people to the country. This climate is very different in other European countries and thus give them a head start concerning the development of digital tools in the healthcare sector. Stefan Gara joins the discussion and brings a new perspective into the round.
Stefan Gara (SG): Is this due to a national legislation or due to a push from the cities to attract more start-ups?
RS: As far as I understood it, it's state based, so national law.
SG: We should definitely change something concerning this situation. We should set the goal to attract the best people to Austria. A land-locked country as ours needs to bring people from the outside so it's a must. We need a different mindset, more open-mindness and let a culture of entrepreneurs enter Austria.
RS: Yes, that’s what it’s about. I see that Vienna has a big interest in attracting and investing in innovative start-ups but if it is that hard to get a visa, it’s a false investment. I almost left Vienna for Berlin but I didn't because I want to have an impact here.
SG: What are the most attractive cities for start-ups at the moment?
RS: Berlin, Munich, Barcelona. Stockholm is starting to be a big hub. Lisbon is very attractive for start-ups. I see the potential in Vienna - the high-level medical research and the urge to invest in innovative ideas but the framework is missing.
SG: Yes, you are perfectly describing the situation. We have the biggest healthcare service provider (Wiener Krankenanstalten Verbund) in Europe. Vienna is a great testing field with huge opportunities in terms of data. This would really match. Unfortunately the administrative obstacles are still huge.
MV: Roi, besides being affected by a quite rare disease you are a health entrepreneur. What exactly is your start-up about, Roi?
RS: My start-up is called Valero Clinical. It is based in Tel-Aviv and New York. We developed a technology that takes the doctors’ medical records and with the help of AI automates a lot of steps that has to be taken. A doctor in the US would click his mouse 600 times within 15 minutes, when he sees the patient. It's a total jungle inside. First of all, we can improve the feeling of care. Second, we can save time and third, we can save money. Besides the AI tools could bring red flags to symptoms. So, basically we used the technology that we have today and match it with technology that is 20-30 years old. We also have preliminary questionnaires that patients can answer before they go to their appointment. This helps doctors to plan a visit. In Austria the procedure is different but still I guess that automated steps would help both: the doctor and the patient.
SG: Yes, indeed. In Austria we first need a political awareness that something has to change in our healthcare system if we want it to be sustainably on a good level. In the hospitals the care is very good but outside there is room of improvement.
RS: How can we optimize the current situation and how can we push digital tools?
SG: First, it's very important to reach a digital change of mind. Today not in the future. This is the problem we have. We have big visions for the future but we are often forgetting now. We need innovation labs to conduct experiments. That’s my political approach. The largest healthcare provider which is part of the city should be open to test different technologies. At least, within this digital framework, we have these living laboratories. How can we give companies the opportunity to use resources in terms of data and give every company the possibility to use them when they have their seat in Austria? In terms of data security from the political point of view we should give people the feeling that they have nothing to worry about when the data is located here. For companies it should be a motivation to come to Vienna. We should open these labs within existing structures otherwise it's not feasible. We need an agile environment in order to reach this goal.
RS: I think that’s a very important step. I often have the feeling that the Austrian healthcare system is being presented as a best practice even though it’s not always the case. I already had some bad experiences when I went to a doctor. I had to wait around 2 hours. I don't understand why I don't receive an exact hour or timeframe in which I should come so that I don't have to wait for hours. As a patient you are in the dark. I would need somebody to navigate me through.
SG: Exactly, here we have the picture of not leaving patients in the dark. With digital tools we can enlighten and help patients feeling less alone during this process.
BV: There is an enormous potential for digital services and tools. A look at other industries, which are often much further ahead, can also help us here. Our intensive examination of the needs of the various stakeholders and those affected, but also of the pain points, which we identified, for example, in the workshop at our Health Innovation Friday in September, already provides a wide range of starting points here. However, implementation can only be successful in cooperation with customers and partners who really want to make a difference.
MV: And these digital services work regardless of the number of people involved and also regardless of time and place. This is precisely why such approaches can make life much easier for people affected by rare diseases - but not only there. From the first symptoms, through the often too long diagnostic path, to living with the - very often chronic - disease.
Veröffentlicht am: 29.02.2020
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