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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).

HL in ID (and how to improve it) exemplifies a blatant research and strategy gap. A specialised approach is vital, as generalised initiatives can perpetuate health inequalities rather than improve them.

As ID patients are underrepresented in HL initiatives, their HL is neglected and thus they are disproportionately affected by negative outcomes. For those with mental capacity, this is avoidable; a targeted strategic approach is urgently needed. Otherwise, compared to their non-ID counterparts, ID patients will continue to be more likely to develop preventable health problems, receive poorer care than they are entitled to, and die prematurely.

Why does this matter for pharma?

In 2018, Cathryn Gunther, vice president of Global Population Health at Merck at the time, described the importance of HL to pharma rather eloquently: “A new drug has no real value unless the person taking that drug understands what that medication is going to do for them so they can take ownership of their own care and adhere to the appropriate medication schedule. Health literacy is a big part of realising that value”.

Evidently, disregarding HL in any group, not just ID patients, would be foolish; what kind of pharma company would want their new drug to have no real value?

As ID is a diagnosis in itself, one may assume that ID patients would not be the target population for pharma companies unless said companies were developing products specifically relating to ID or the conditions of which ID is a symptom.

However, this is a fundamental misconception – every single pharmaceutical company’s work relates to intellectual disability. This is because patients with ID, just like everyone else, are at risk of being born with or developing other conditions that these companies have a direct stake in – diabetes, cancer, etc. – therefore, to ignore ID-specific HL needs is to neglect their own target patients.

Furthermore, people with ID have a higher burden of multimorbidity and long-term conditions such as epilepsy and heart failure than the general population. It just does not make sense to ignore the need for ID-tailored HL support.

If pharma companies don’t step up, their profits and patients will pay the price

Ironically, despite the fact that ID patients are particularly highly medicated, the healthcare system fails to appropriately accommodate for the fact that their disability directly impacts their understanding of health, disease, and treatment. Furthermore, ID patients often must adhere to multiple medications, and this complexity exacerbates the risk of confusion surrounding treatments. Due to these comprehension barriers, medication non-adherence is a particular concern regarding this patient group. Non-adherence also has notable commercial implications; if medicines are not taken as often as instructed, prescription refills are reduced, which leads to revenue losses for pharma. This is no small matter; each year, the US pharmaceutical industry alone loses 250 billion USD in potential revenue due to non-adherence.

Another concern surrounding inadequate understanding of medications is the risk to patient safety, something that pharma of course have a duty to protect against, and one cannot simply assume caregivers will be available to protect against this. Appropriate care is sorely lacking for huge numbers of people with ID; indeed, social care inadequacies are one of, if not the, biggest factors impeding these patients’ quality of life. Therefore, one cannot guarantee that all ID patients who need support with their healthcare are receiving said support.

If pharma companies wish to meaningfully honour their commitment to patient centricity (or if such a commitment has not been made, move with the times and enjoy the financial returns), they have a responsibility to support ID patients in understanding and applying knowledge surrounding their treatments. Fortunately, the starting points are clear.

What can pharma do to help?

Lay the foundations
The first step pharma must take is conducting research into the particularities of ID patients regarding how they make health decisions, how they interact with and derive meaning from information, what matters to them, and what they need help with the most.

Then, in collaboration with ID patients, caregivers, and transdisciplinary experts, pharma must work towards appropriate conceptualisation of (and design of measurement tools for) HL in ID. With this in place, ID-specific HL research may be performed to inform the development of effective strategies and interventions.

Educate and evolve
Another key shift pharma companies must enact is moving beyond the outdated assumption that information provision and patient knowledge expansion always translates into improvements to outcomes and critical engagement with health interaction. Systematic, company-wide training for many years will be necessary to effect this shift. While moving beyond standard lay language materials to provide health information in a manner accessible to varying levels of ID (for example, via more nuanced language adaptations, development of video resources, training of HCPs in ‘Teach/Show Back’ practice) would be of value, we cannot stop there; research and strategies must be specifically aimed at equipping ID patients with the skills to not just understand health information, but also take appropriate health actions.


By investing in HL in ID, we can achieve a triple-triple win for patients, pharma, and society. The first triple win comes from clarity in conceptualisation and measurement of HL in ID; patients will be more appropriately supported in self-determination, pharma will benefit across countless therapy areas from the clarity in researching and improving HL in ID, and society will benefit from a richer evidence base through which HL in ID can be promoted in an effective, transdisciplinary manner. The second triple win comes from the resulting improvements to adherence; better patient outcomes, recovery of otherwise lost revenue for pharma, and reduced health inequality in society. The third triple win comes from the added protection to patient safety; less risk of harm to patients, more meaningful patient centricity in pharma, and reduced healthcare costs for society. Evidently, we all stand to gain from investing in the HL of ID patients.

The bottom line
ID patients face unique challenges and inequalities in HL; however, it is possible to both study and improve HL in this group. Pharma can play a valuable and transformative role in addressing low HL in ID, modernising outdated approaches to research and care and making a meaningful difference to patient lives that will be reflected in pharmaceutical business success and advancements in society.

About the author

Olivia Kersey is a Patient Strategist at the Prime Patient Centre of Excellence, which works to deliver business solutions in line with patient needs to achieve a triple win for patients, pharma, and society.

About Prime Global

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Prime Global are experts in medical communications, market access, patient insights, engagement, and recruitment. They help the world’s leading biotech, pharma and healthcare companies to transform global health and patient outcomes, now and for future generations

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