This interview with Kristine Sørensen from Global Health Literacy Academy (Denmark), President of the International Health Literacy Association and Executive Chair of Health Literacy Europe will explore these issues.
The digitalization of healthcare is changing the way that patients search for information and interact with doctors. We have got an unlimited access to information, but can we really use these new opportunities? Are we really gaining knowledge that leads to better health?
The digitalization of healthcare is a wonderland of new opportunities. It helps to democratize information in a way which was unknown before. Everyone can search and find information they will need to educate themselves. We have a wealth of opportunities to become enlightened. However, there are many pitfalls. Not all information is reliable. The mass of information is overwhelming, and it is difficult to distinguish what is sound information and what may even be harmful when it comes to health advice. More than ever we need functional, interactive and critical health literacy to access, understand, appraise and apply information to promote our health.
Many say that the "digitalization of healthcare" means "democratization". But the availability of the technology doesn't automatically mean that everybody can operate it. In the first phase the so called "early adopters" profit most. How is it possible to speed up the adaptation of digital health solution so that everybody can take advantage of it?
I tend to consider three groups of people – the prosumers, the consumers and the nonsumers. The prosumers are professional consumers who are the early adopters, the frontrunners, who can develop their own skills because they see a clear opportunity to invest in themselves to benefit the most from new digital opportunities. They have also the means to do so. Consumers behave like most of us. We know about new opportunities, we know that we ought to invest and learn new skills, but we are too busy, too concerned or too lazy to really get started and only when it becomes mainstream will we catch up. The nonsumers are consumers who are not able to join the new developments. They may not have the means or the skills and resources necessary to join the digital movement although it would help them.
The use of electronic applications must make sense for the patients and make it easier for patients to navigate.The challenge is that the digital opportunities are mainly designed for the prosumers and consumers, whereas the nonsumers will have little or no chance to benefit. The first thing is to recognize that they are there – the nonsumers - and not just ignore them. The second step is to redesign digital products so that they become available for the nonsumers as well. The nonsumers are not likely to get more resources on their own, hence, it is up to the providers offering digital services to provide products and services that lower the barriers and meet people where they are – inside or outside the digital lifeworld. Only when the developers take responsibility, I believe, can we bridge the digital gap. We often hear that digital health can improve access to health services and eliminate inequalities. How would you refer to these hopes? Digital health is certainly making access to health a lot easier than it was previously. In India, one hospital use WhatsApp to make home consultations. They speak with the patients who are at home. The patients can send photos of their wounds and only when it is necessary are they are asked to come to the hospital for an appointment. In this way, people save money and time and the hospital saves their resources for those who really need them. It also shows that digital solutions are not always expensive solutions. At the same time, there are people who do not benefit from digital advantages. In my view we could start by making free access to the Internet a human right of our times and we could also lower the prices of electronic devices necessary to participate actively in society. Health literacy can be supported by well-designed digital tools. We have many examples of how a clear and understandable user interface leads to the acceptance of a new mobile health apps. What, in your opinion, is the key factor in creating these kinds of user-friendly solutions? Simplicity is essential for effective health communication. Plain language is another feature that is underestimated. Testing new tools among people with both high and low health literacy will provide immediate feedback that may enhance usability. Co-production of health assets where citizens are involved from idea generation to the execution of products will be crucial to enhancing people-centred approaches. Lastly, the apps should not only provide information, they should first and foremost stimulate activities to manage health. Many studies have showed the differences in health literacy among countries or income groups. Which relationships between health literacy and socio-economic status are most alarming? According to Accenture, low health literacy costs U.S. employers 5 billion dollars in administrative expenses a year because U.S. consumers are unable to navigate the healthcare system. Consumers are expected to understand and navigate the complex layers of a healthcare system that was not designed with them in mind. It is a systemic problem that education alone will not solve. This is not about Americans failing in health literacy; this is about the complexity of the system failing them. The same may be seen in Europe and unfortunately on this journey the most vulnerable are left behind. The elderly, people with a low social-economic status and minorities are groups that we should be much more mindful about when it comes to the systemic failure to reach out to people. Let's discuss two case studies: a company that wants to encourage patients to use a new mobile app and a government that is implementing electronic health records and trying to convince patients to use it. What basics elements of health literacy should be taken into consideration to make the projects successful? First and foremost, the use of electronic applications must make sense for the patients and make it easier for patients to navigate. As Simon Sinek explains: start with why! eHealth is not the end, it is a means to an end, namely health, wellbeing and quality of life. Two applications have changed my own life considerably – home banking and mobilepay. Having the opportunity to control my finances through my phone has enhanced my overview and financial flexibility. Mobilepay, a Danish app, means that I can quickly transfer or receive money to my children or my friends or as payment in shops – just by using their phone number. They are easy to use and put me in control so that I can easily interact with others. These kinds of attributes are important for health apps and patient records to become mainstream. The acceptance of new technologies – according to the demographic and psychological characteristics of defined adopter groups – describes the "technology adoption life cycle". So, we have "innovators", "early adopters", "early majority", "late majority" and "laggards". Can health literacy positively change this adoption curve and cut the number of "laggards" for example, the group often described as conservative, elderly, and the least educated? In this game, digital health, resources are essential to get ahead of the curve, especially, financial resources. Only a tiny majority act conservatively. I believe most people at the tail of the curve are lagging because they simply do not have the same means and opportunities as the frontrunners. The barriers are too high for them to make a sprint. You cannot create a fair race when some are driving a Ferrarri and others drive a second hand, old Fiat; in the cases that they have access to a car at all. Health literacy is a political choice and an essential cornerstone of creating equity. With equity I mean that everyone will receive tailored support that matches their needs and health situation. The frontrunners will most often find their way on their own. The worried well only need a bit of support to be fine. The vulnerable will require more effort. It must be noted that the goal is to help with respect and dignity, not to put down those who are in need. When people gain knowledge, motivation and competencies they can manage much more on their own in a way that they personally prefer. If we talk about seniors... they could profit from digital health solutions most but the lowest levels of digital health literacy prevent it… We must look at the individual to see which skills are available. My father-in-law needed a “mouse course” to get started when he got his first computer some years ago. In contrast, my mother-in-law is tutoring at the local elderly centre showing senior peers how to use a computer, a smart phone and a tablet. She shares her experiences with me. Some people are super users Skyping with grandchildren far away, while others are still getting used to the new devices. Mentoring is a good way of changing attitudes and behaviours. My mother-in-law is a role model in the local community and her fellow seniors are not afraid to ask her for help. If she can do it, they can do it too. We cannot halt progress and fortunately, the digital movement means that many things have become less and less complicated which helps the elderly too. Soon, the new generations will be digital natives and the challenge may not be as difficult as it is now. Professor Ilona Kickbusch, public health expert, stated: "Health literacy is a critical component of the democratization of health". What do we have to do to make healthcare democratic? Recognizing the impact of health literacy will help us to tune in to the needs, dreams and wishes of people and the structure of health services around these indicators rather than only focusing on the productivity and costs of systems. We need to re-orient healthcare with both hearts and minds and give people and patients a voice to tell us what matters most to them. Notably, we need to learn to listen. In the long run, I think that this is the most sustainable approach for the future. I think that health literacy is a disruptive power that will enable us to meet people where they are and, in this way, ensure healthcare for all. From the author: This interview was taken during European Health Forum Gastein 2018. Kristine is very passionate about health literacy, empowering people and public health. She is also an organizer of the European Health Literacy Conference. The 4th edition of the conference will take place in Dublin, 14-15 March 2019. For more details please visit: www.healthliteracyeurope.net
