What’s wrong with conferences on digitalization in healthcare organized without patients on the stage?
There is one phrase that is used often: “Patients know best what their needs are.” They can explain what they need and what things should look like. Excluding patients also means avoiding diversity and equality, limiting value and benefits to the audience. I think nobody wants that, right?
Frankly, patients need to be represented at these conferences to provide value and better direction for the discussion. They can help companies to create tools and services tailored to the users’ needs. If we want to talk about patient-centricity and customer-oriented products, we must involve patients and listen to them.
On the other hand, one could say that each of us is a patient in some sense, so even the CEO of an IT company can also represent the patient’s voice. Is that the case?
This is something I’ve heard for many years now. I always think: “Really?”
Honestly, of course, you may become a patient sometimes. But at the moment – if you are a healthy person – you are not a patient. And just to come with statistics or numbers doesn’t mean that you can talk about the needs of patients and their lives.
When you become a patient, your life changes tremendously. When I received multiple sclerosis (MS) diagnosis 16 years ago, my life was over. It exploded and was chaotic. You have to find your way back, and you have to start living differently. My situation is stable today because I reorganized my daily life, began to sense and respect my limits, expanding them over the years.
But it’s not so easy to talk about people living with chronic diseases. A healthy person can‘t walk in my shoes because this person has no idea what my condition feels like, doesn’t know my problems in detail. Numbers are good, but experience is critical. So CEOs can talk about living with a disease once they are living with it. But to just talk without understanding could be a problem. I’ve seen that at many conferences. It’s pure theory but not pure life.
You often attend various events in healthcare. Do you sometimes feel like you are invited because the organizer wants to emphasize that the patients are “included” rather than to listen to your opinion? How do you react in such a situation?
Of course, it has happened in the past. As soon as I noticed that, I discussed it with other patient experts; we started to research the congresses thoroughly and ask the organizers for the aim of the invitation.
I’m not a “showcase” patient or woman. And also, organizers have realized that we are not coming just to say or show that “patients are involved.” If I’m invited today to a conference or an event, I speak or advocate as an expert – because people know that I have a message to deliver, knowledge, and experience. What’s more, I will mention this if I feel like a background actor at a conference – I can sense the situation when I sit among panellists because the organizers need a patient to give the illusion that each party is equally represented. There are social networks and hashtags to express that feeling in a very tight time frame, providing a clear statement to the public.
As someone living with MS, what benefits do you see in digital health? How can technological innovations support you?
Technological innovations are already there and I use them.
I have a smartwatch to track my activities and to help me to get motivated to do sports. In addition, I’m controlling my symptoms with an app. This allows me to manage my daily life better and keep an eye on changes in health parameters.
There are great tools out there enabling you to check if you take your medicine correctly, do your exercise, manage symptoms or stay informed about news in R&D. I know that some doctors have started to use apps to keep in touch with patients or track their symptoms to see how things are going. Such innovation helps us to improve well-being and receive personalized recommendations for medication, etc. Besides, I see the massive benefits of AI in radiology when checking disease progression and finding biomarkers or signs of progression much earlier.
As a patient, you could be engaged in numerous other issues—for example, drug policy or patients’ rights. Nonetheless, you’ve been concentrating intensely on digital health recently. Why?
I am also engaged in the other areas, of course. The one does not exclude the other. I’m not always visible when I do things like talking about patient rights or sit on panels regarding a Health Technology Assessment (HTA) consultancy. By the way, patients’ rights are an essential part of digital health. Just to mention such examples like data ownership or access to information etc. There are direct connections among these different topics, so I’m not doing just digital health.
But to come to the point: I’ve been talking for more than ten years about digital health because I see the benefits. But, unfortunately, not everything happens in the right way or at an expected pace. One reason is the ongoing data protection discussion and also inadequate communication with the citizens. Many decisions are made by healthy people and those are not communicated and explained to citizens and patients. We have a significant gap in digital and health literacy. Skills are also a patient’s right. But nobody is taking good care of that at the moment, although the problem is well-known. So, unfortunately, instead of doing something, we’re still having discussions. We should remember that there is the right to receive the best care, also in digital health.
What do you think providers of telemedicine solutions, mobile apps, and health platforms still don’t understand about patient expectations?
They underestimate the meaning of the patient, who is the end-user of technological innovations. Therefore, in order to create a user-friendly tool, you have to talk with the users.
So what is the main message you want to reach med-tech companies creating digital solutions or politicians creating a digital policy?
Talk with your users or the “target group.” They live with the disease you create a project or tool for.
Ask them, collaborate with them to create the best solution you can make. By the way, “working with all patients” means not just cooperating with an organization – you should also talk with influencers or bloggers who are experienced patient advocates with an excellent connection to the communities. This approach creates a new perspective and holistic approach to individuals and communities. Only this way it’s possible to develop the best and most effective tool to help people improve their lives or health. In other words: Build the networks directly in the group you are working for.