"We want to ask ourselves questions that have never been asked in the field of health"

 

Manuel Armayones is the Development Director of the UOC eHealth Center, a new academic centre specialized in digital health, to be officially presented on 28 June.

 

 

Manuel Armayones is the Development Director of the UOC eHealth Center, a new academic centre specialized in digital health, to be officially presented on 28 June.

 

In November, Marta Aymerich, Vice President for Strategic Planning and Research, called together a group of professors from the faculties of Health Sciences; Psychology and Education Sciences; and Computer Science, Multimedia and Telecommunications, and colleagues from the Doctoral School, the IN3 and the Office of the Vice President for Globalization and Cooperation. In the meeting, we discussed many health issues and realized that in the different departments of the UOC we were already doing many things in this field. In effect, the eHealth Center already existed de facto by providing assistance to the numerous groups, projects and publications of our professors and researchers but was not seen institutionally as a multidisciplinary university-wide initiative.

Yes, it was a debate we had been having for some time. In fact, the idea of creating the eHealth Center can be found in the Faculty of Health Sciences Work Plan, which was the starting point for what ended up as this new academic centre. And it quickly found common ground with the faculties of Computer Science, Multimedia and Telecommunications, and Psychology and Education Sciences. But within the field of health, we want to take a salutogenic approach. In other words, we do not want to focus on what makes us sick, cures us or kills us - this is already studied by many centres - but on the social elements that explain how we feel, how we are and how we stay healthy. And this is closely linked to the digital paradigm of health and citizen empowerment.

This salutogenic model comes from the studies of Aaron Antonovsky, a Jewish doctor who analysed women survivors of the Nazi concentration camps and observed that some were very well while others were far more affected by the experience. And this difference is explained by what he saw during the interviews with these women and that he called "the sense of coherence", an ability to perceive life experiences that allows us to act constructively in unfavourable situations.

After the meeting in November, which resulted in some clear ideas and a draft of the Strategic Plan, at the beginning of the year we explained to all the directors of the faculties why we wanted the eHealth Center to reach right across the university and, as the President said, to overcome barriers and artificial inertias, which often blinker us. It was very well received. And as a transdisciplinary initiative it will not have a direct link with any single faculty but with all. Currently we are identifying the UOC projects related to health linked to the six lines of work of the eHealth Center. So we will have a complete inventory and the website will be operative in June.

We can carry out transdisciplinary research to try to resolve problems that go beyond any one disciplineand, undoubtedly, problems related to the field of health cannot be resolved through the health disciplines alone but neither can we depend on any one social discipline in isolation. The idea is to create new methodologiesfor capturing reality. It will be a completely hybrid, transdisciplinary, work. And this does not mean each one working within their own discipline but rather participating in all disciplines by contributing visions, methodologies and taking on the risk of clashing with the prevailing orthodoxies. We want to ask ourselves questions that have never been asked in the field of health, and to try to find an answer together. Therefore, it is an innovative field that can provide great opportunities.

But you have to know where to look, and for this you need skills, a critical spirit, to know when a piece of information is reliable, etc. But it is true that we are no longer passive patients. We increasingly find out more from the Internet and use more mobile devices and apps. When we fall ill, we don't just wait, we are proactive. Faced with a need, we can even conduct crowdfunding campaigns and "recruit doctors" to the cause, which is disruptive as we had always talked about "recruiting patients". All this involves a social change, and at the UOC we have this mission to make a social impact and help mentor and train people to lead this change, so it is a great opportunity.

When it met last year in Shanghai, WHO said that, to keep the population healthy, we must work in three main directions: good governance -which ends up affecting our health- the existence of smart and healthy cities ¿ which means, for example, that there are defibrillators connected to the emergency services-, and the digital literacy of the population. Because when people get sick you must be able to go to the source, to the hospital website, etc.

Apps, websites, studies of the experience of patients and users, needs analysis, etc.

The data tells us that in 98% of cases patients will use a technological tool during the process, whether they search the Internet or use an app or wearable, etc. Increasingly, technology is all pervasive, and this will go further. Therefore, we understand that the user experience is no longer analogue but digital, whether you like it or not. It may well be that there are sick older people who do not look at the Internet, but their children do so on their behalf.

This May, together with the OSRT, we met with the Hospital de Sant Pau to work with relatives, doctors, nurses, etc, in connection with Parkinson's. We have worked to identify the actual needs of relatives rather than those we think they have as experts. Based on the needs identified, we will see what we can do and the faculty of Computer Science, Multimedia and Telecommunications will create a prototype. And there will be many similar projects with other centres.

They will result in what people ask us for. Because we might think of an app but the people want a big touchscreen. The eHealth Center must help to meet real people's real needs. We aim to be a social service.

We want to be as open as possible, for the apps to be available to everyone. The idea is that the end user should not pay for it but that it should be funded through a project or external financing.

At the UOC and the UPF we are working, for example, on a project about communication barriers between doctors and patients in the field of rare diseases of children aged between 0 and 5. We have to see if people understand the information they are given. So we work with linguists who demonstrate how there is a lot of medical information that citizens do not understand because not understanding a medical document involves avoidable suffering that forms part of the disease. And in the case of rare diseases, we have also analysed the websites of patients' associations, which are also not as easy to understand as we think. Therefore, we try to help make medical content less difficult to understand and, in addition, improve citizens' skills. Because there are studies that show that what doctors say they have told the patient often does not tally with what the patient has understood. So we have a problem.

Absolutely! This is why the Catalan Ministry of Health and other important organizations are delighted with this project, because one of the four main lines of the Strategic Plan for Catalonia for is digital health. But the most important aspect is citizen empowerment. We want to contribute solutions to some of the problems related to health systematically, precisely and rigorously, and one of them, by way of example, is the level of digital knowledge and skills of both patients and relatives, but also of professionals in the health and social fields. This is what is called "digital literacy in health". And this is why we will work with governments, patients' associations, hospitals, universities and the industry.

Yes. In Toronto we will work with two major centres, the Center for Global eHealth Innovation and the Institute for Global Health Equity and Innovation. The first was founded 20 years ago by Alejandro Jadad, who in November will be invested doctor honoris causa by the UOC. It is the international benchmark centre. I had the honour of spending five months there for my postdoctoral visit and working with him. Currently, Jadad directs the Institute for Global Health Equity and Innovation. And we will sign a cooperation agreement with both of them to become their strategic branch in Europe. And, like them, we do not want to understand health as an absence of disease but rather, as Jadad says, as our ability to deal with what life throws at us and be able to find the resources to respond, as adaptively as possible, to that situation.