Health literacy for the intellectually disabled: is pharma doing enough?
What is health literacy and why is it important?
Health literacy (HL), defined by the CDC as the degree to which individuals have the ability to find, understand and use information and services to inform health-related decisions and actions for themselves and others, is a valuable tool against health inequalities and negative patient outcomes. Low HL is associated with poor patient activation and increases to morbidity, use of emergency services, premature death, and more.
Some patients are being left behind
We are in a HL crisis. Only 12% of US adults are health literate enough to understand and use health information effectively. HL is particularly lacking in vulnerable patient groups, thus contributing to health inequalities. Moreover, despite the concept of HL having rumbled around for decades, research and initiatives to date have largely neglected one of the groups who rely on healthcare services the most – that is, people with intellectual disabilities (IDs). ID patients are defined as those who have a significantly reduced ability to understand new or complex information and to learn and apply new skills, and the very nature of their disability can pose major challenges to expressing health needs or understanding how/why their medication should be taken.
Healthcare is a particularly pertinent matter for people with ID
ID patients form one of the most heavily medicated groups in society. Although these patients face significant challenges due to their disability, ID presents across a spectrum, and many ID patients are capable of (and wish for) at least some degree of ability to manage and make their own choices regarding their healthcare. Thus, it is concerning that through the limited research conducted, ID patients have been shown to have insufficient understanding of their medication and be confused by or unaware of related side effects. This is despite legal requirements for all ID patients with mental capacity (the ability to make their own decisions) to be effectively informed about medication risks and also receive information in an accessible format (the latter of which 70% of GP surgeries in the UK fail to provide).