In health care, having a patient optimally informed is of the utmost importance. Well-informed patients take better care of themselves, tend to have fewer complications, have better treatment outcomes and feel more in charge of their own health. However as there is an increasing amount of information available to patients, by means of printed brochures and websites, problems arise for people who suffer from low literacy, as they will automatically be at a disadvantage.
Illiteracy is the inability to read or write. Many more people have low literacy skills, they have trouble fulfilling tasks most of us think are easy such as reading a menu, writing an email or finding out a train schedule. Most of these people lack other abilities as well, such as digital skills and mathematical calculation. Almost all of them should be regarded as being ‘health illiterate’, meaning they lack knowledge, motivation and competencies to access, understand, appraise, and apply health information to make judgments and take decisions in everyday life concerning healthcare, disease prevention and health promotion, or to maintain or improve quality of life. In the European Union alone, this effects 1 out of 5 adults. Unfortunately, these numbers are unlikely to change within a short time and may be even worse in third world countries.
Obviously, this has consequences on issues regarding health promotion and disease prevention, as people are unable to access, understand, interpret and judge the relevance of information on risk factors or health issues. Patients with low health literacy skills often miss their appointments or show up on the wrong date or location. They therefore visit the hospital more often than literate people do, as they struggle to understand the given information, or incorrectly follow instructions. Words that seem so clear to us, like ‘incontinence’, are only understood by a minority of people.
Illiteracy also results to, for example, not stopping anticoagulants before an operation or having eaten while not allowed to, leading to the cancelation of procedures. This also has a financial impact, estimates related to the cost of low health literacy to the U.S. economy, is between $106 billion to $238 billion annually. More importantly, besides logistic and financial consequences, health illiteracy results in worse health outcome parameters, partly because of the fact patients only seek help in a more advanced stage of their disease, and partly because of the impact of not understanding instructions on treatment outcome. Especially the proper use of medication can be a real challenge.
What makes it difficult to act on the problem of low health literacy skills is the lack of awareness amongst those who deliver care, but also the tendency amongst patients not to come forward as someone with reading problems. Many of these patients feel ashamed, not in the least because of a society that equals illiteracy with stupidity. More awareness of the problem and especially a noncondemning attitude amongst care-givers may ease patients to come forward, so extra help can be offered.
Another big step is to adjust the way we hand out – or seek for – information. Instead of forms, leaflets and websites full of text, images, speech and animations should be used. For example in the Netherlands, the Dutch Urological Association embraced the ‘Aap-Noot-Nier' project (a urological, humoristic reference to the first three words Dutch people used to learn reading), a project turning leaflets full of text into leaflets with hardly any text at all, but consisting of easy to understand images. The leaflets are made by urologists and low literate people together, as are the corresponding animations, for it is known that those who can’t read obtain the same level of information after watching spoken animations as literate people do.
All this, and more about this important topic, will be addressed at workshop 31, ICS 2018, Philadelphia (Prof. D. Bliss, F. Schlatmann, M. van Balken (chair).
The workshop will take place on Friday August 31st, 13:30-14:30 hrs.