Kristine Sørensen, Founder of the Global Health Literacy Academy, presented her latest study during the EHFG 2019 session “Mind the citizen – how health literacy can disrupt cancer care”, organised by the Health Literacy Coalition. Focusing her research in Europe, Kristine analysed 31 national cancer control plans – only five had included health literacy as a priority.
Having a strong interest in her work at the Global Health Literacy Academy we wanted to learn more about the disruptive power of health literacy and its potential to improve health equity and social inclusion.
Lina Papartyte & Gloria Raguzzoni (LP & GR): What is the disruptive power of health literacy for you?
Kristine Sørensen (KS): Health literacy is about how people find, understand, judge, and use healthcare information in order to make appropriate health decisions. Taking care of our health should be part of everyday life, not just when we are unwell. However, we know many do not possess the necessary knowledge and skills to make informed health-related decisions – these are the individuals we must focus on. When people have functional, interactive, and critical health literacy skills they can become partners in their health decisions together with healthcare professionals. They can ask questions and understand the consequences of certain choices or treatments for their personal or family situation. Before reaching that state we first need to achieve a certain level of health literacy, this is where the disruptive power comes in.
LP & GR: Health literacy is a lot about health equity, as we learned during the session. How do you make sure you reach the most vulnerable in society?
KS: In terms of the equity dimension in health literacy, we see a very strong social gradient. Those with lower educational attainment or low socioeconomic status are also known to have a lower level of health literacy combined with a lot of health troubles in their lives. One could say that there is a triple burden for the most disadvantaged, because they tend to have poor health, they have poor health literacy and they are usually financially impoverished. Trying to work against those very heavy barriers, we see that some people need a lot more care and support from the system’s point of view. It is important not to leave them out or allow them call through the cracks of our system.
LP & GR: What would you identify as the main barrier to achieving health literacy in the population?
KS: Some of the barriers we see are due to the way in which services are organised. It is not always straightforward to visit your general practitioner or a doctor in a hospital. Indeed, some people have difficulties in finding their way, some have difficulties in understanding their diagnosis. We observe that patients sometimes receive a diagnosis, for instance, the COPD (Chronic obstructive pulmonary disease) but do not fully understand what it means. In order for a patient to understand the information they receive health professionals must speak to them in a language they can understand.
LP & GR: Do you find elements of your role challenging?
KS: It is a challenge. Sometimes you feel like Sisyphus from Greek mythology: he was forced to roll a boulder up a hill only for it to roll back down each time he neared the top. However, after each try, you are a bit wiser. I think it is also challenging and provoking that we have the knowledge and skills to solve health literacy-related problems, but we have not succeeded in doing so yet. This is because some people, including health professionals, prefer to remain in their comfort zone and are unwilling to change.
To give you an example, I was recently at a conference and spoke to a Russian doctor who said that a major barrier for him was the lack of time during a consultation, I asked, “How much time do you have?”. He had only ten minutes per patient, I told him that for a change maybe one would need to allocate twenty or thirty minutes to explain complex diseases to patients. The first consultation could be longer, but as a result the patient would require less time in subsequent visits. “No no no, ten minutes”, he replied.
Then another person passed by, a doctor from France, I said to him that I hear a lot about the barriers health professionals encounter in their daily work, especially lack of time. He immediately asked me “What do you mean, time? I always take forty minutes in my first consultation to have the right input from patients and to understand their situation better.”
So I was running after the Russian doctor to get him to speak to the French doctor and during their encounter you could see on the Russian doctor’s face, he had this moment – “Aha, it is possible!”. How can we change the system? It takes people who are brave enough – professionals to say ten minutes is not enough.
Challenging the Russian doctor I said, “There is something called ‘do no harm’ and I believe that with all the health literacy research we have, if we let a patient go who does not know what to do, we are doing him harm”. That made him think – it’s about planting seeds and maybe we will see the flowers tomorrow, next year, or in ten years’ time.
LP & GR: If you could implement one solution what would that be?
KS: Partnership. In our session here at the EHFG 2019 we spoke a lot about how to increase the quality of dialogue and partnership between professionals and patients.
I’m part of a campaign called “smash the glass”. It is concerned with breaking the metaphorical glass wall that exists between patients and physicians. The banner of this campaign had a huge hammer and glass everywhere. It might be that we need, this huge hammer to tear down the wall and make a lot of noise. While with some people we can have a dialogue, for others it is still a wake-up call. They think they do the right thing, but actually they do not. We need to help them find a way to talk to patients, a way to engage them, and do it with the patient and not for the patient.
LP & GR: What one thing would you like the readers to know?
KS: It would be that alone you can make a difference, but together we can make a change. I have been involved in the EHFG for ten years and can see what began as problems have now moved to change. It’s absolutely fantastic and I encourage everyone to join the social movement of health literacy to ensure we do not leave anyone behind.
This interview was conducted by Young Gasteiners Lina Papartyte, Project and Liaison Officer, EuroHealthNet, Brussels and Gloria Raguzzoni, Public Health Resident, University of Bologna.