«I see health literacy as a dynamic balance between the concession and assumption of responsibility»

«The eHealth Center is an academic centre set up by a university to benefit society»

 

Eulalia Hernández has been working in the fields of psychology, health and technology since 2003 and this three-pronged approach has formed the focus of her activities within the Universitat Oberta de Catalunya eHealth Center since she joined the team in 2018. Her principal area of interest relates to looking at the relevant psychological aspects corresponding to the use of technology in healthcare and, in particular, its ethical use. A fan of the Black Mirror series, Hernández is fascinated by technology because she is amazed by the things it can be used to do and because it compels her to challenge pre-established norms.

 

Health literacy has long been a topic of discussion.  Why is it so important? 

Because there is a proven link between health literacy and improved health. In fact, health literacy should not be focused on the individual citizen at all. If we do that, what we are saying is that they lack the relevant skills and knowledge that "the system" or "the experts" will provide in order to access the complexity of the health system or improve their care. And it should be the other way around. The question is what we can do to make the health system capable of responding to the complexity of the individual. The system needs to enable an individual to promote their own health and that of those around them, prevent disease and enjoy a good quality of life. I see health literacy as a dynamic balance between the concession and assumption of responsibilities.

Could you give us an example?

Let's break it down. It's not about being taught to read a medication package insert, but about making it easier for everyone to read and understand and more accessible in all languages, formats and contexts. The challenge is to make the information easy to understand for everyone with their different abilities. Hence, the transfer and assumption of responsibilities between professionals and citizens.

It's also a dynamic balance, however, and that complicates the matter even further. How can I access the information in the insert when I suffer from presbyopia? And what happens if I don't have the insert with me because I keep my pills in a pillbox? And what about when I'm feeling very anxious and can't remember the exact dose? And…?

So, the literacy or the skills, knowledge and attitudes related to my healthcare and that of my nearest and dearest need to be adapted to the situation, to the individual, to the specific point in time: they need to grow with you!

Are we talking about more mature patients?

It's hard for me the make a judgement about that as I'm from the field of evolutionary psychology, where the concept of "maturity" is the subject of some controversy. We would be talking about a responsible patient, with an effective ability to make decisions about their own health and illness. That's why we talk about empowerment. It's not just about knowing how to make decisions, but also about our ability and desire to do so. It's possible that I, as a patient, may not always want to make a decision about my health; I may want it to be made for me, because I may not have sufficient information, or I may be uncertain or afraid of how to deal with the consequences of my decision. In that case, I need to be able to decide that I don't want to or cannot make the decision and delegate it to the person of my choosing.

People are afraid of the technology invasion... 

Yes, hence the importance of boundaries... At the end of the day, ethics are key in terms of technology use. That's why literacy is so important: for example, it's not about me learning about what is being done with my data, but about having it explained to me so that I can decide whether or not I want to hand it over. The same applies to the technology used to assist with everyday life (for example, geo-positioning or sensors and cameras in the home). The key issue is when and how the technology should be introduced and how it challenges our privacy and affects our relationships with those with whom we share our lives.

 

Patient empowerment

How would you define the term empowerment in relation to patients?

It's a word that is generally derided with most people of the opinion that it doesn't accurately convey the desired meaning. There are those who relate it to an active patient, but you can be active and not be informed and act as a result of inertia: is that the definition of an informed or committed patient? I don't know how to definitively define empowerment, although I'm sure it would involve being informed and being responsible, active, participatory and committed. 

How could the UOC eHealth Center empower patients with regard to health promotion?

The eHealth Center is an academic centre set up by a university to benefit society. Its objective is to promote quality training for all healthcare stakeholders, professional or otherwise; to generate knowledge based on research, as is already being done, and make itself accessible to organizations, associations and companies in order to promote improvement in people's quality of life. That is its mission, and the people who work within the eHealth Center are actively committed to pursuing that.

Could the use of technology result in the dehumanization of society? 

I took part in a seminar a few weeks ago and, at the start of the session, we were all in agreement that technology does not alienate people but, by the end, there were a number of delegates who felt that it did. This change of heart was the result of a discussion about the idea of a person with Alzheimer's wearing a geolocation device. The person has the choice to wear  the device externally, but what would the situation be if they were given an implant? The answer was unanimous: that is alienation, it's dehumanization. The subject is still something of a sensitive issue, depending on the way technology is used. The optimal situation is to provide a professional with technology because it makes them more efficient. Therefore, the ideal solution would be to develop a piece of technology that is useful and meaningful for people in the context in which it should be used; the perfect pairing between the person and the technology.

How do you envisage the patient of the future to be?

Well, better than the current reality. A more educated and confident person in terms of dealing with health and illness together with professionals. But that is only possible within a conducive context (social, economic, political, educational, attitudinal...). Technology? Of course, but used in a way that is a natural and inherent part of everyday life (and therefore healthcare), not as an add-on.

What interests you most about e-health?

Everything it enables you to do that, if done ethically, knows no bounds. The thing I don't like is that it is being freely used to generate needs: what is known as the tyranny of health, or the obsession for mobile applications for recording your data (consciously and unconsciously) without any clear or effective objective, at least for you! Technology should help us to promote health, prevent disease and ensure people's quality of life and wellbeing.