You probably already know that words contain a lot of power, so it’s important that we use them well. If you’re always using complex scientific lingo, such as those littered throughout clinical trial protocols, it can be hard to translate your messages effectively to patients with little to no scientific knowledge. In other words, you have to consider health literacy, which has been officially defined by the World Health Organisation (WHO) as:
“The cognitive and social skills which determine the motivation and ability of individuals to gain access to, understand and use information in ways which promote and maintain good health.”
The WHO also clarifies that health literacy means more than patients being able to make appointments or read leaflets, it means that patients are equipped with the right information to feel empowered enough to take control of their own personal health. Knowledge is power, one might say.
But how is this related to clinical trials, you ask?
Poor health literacy can lead to misunderstanding of information, which in turn leads to:
1. Medical errors
2. Failure to follow protocol instructions
3. Lower adherence to medical regimes
Low health literacy can reduce patients’ confidence levels, and increases the chances of them not engaging with available treatment options.
Think back to all the points in a clinical trial where a patient will need to have good health literacy, like the consent form. Patients are expected to navigate masses of information about the trial: study duration, the procedures involved, risks, other treatment alternatives, data confidentiality, the right to withdraw… the list goes on. What happens if a patient thinks they understand the procedures involved in a trial, gives consent, and it isn’t what they expected? Isn’t it likely that they’d drop out?
How can we cater for those with lower health literacy?
Firstly, you need to recognise and respect that not everyone is health literate, and act in a way that would never exclude someone based on this. One of the best things you can do is to make sure you avoid the use of complex terminology. Also, be aware of instances where seemingly ‘simple’ language differs in a medical setting. Research has found that the use of commonly used words can still lead to misunderstandings about one’s health.
Recent research found that the use of simple terminology improved understanding. For example, use of the terms ‘study’ or ‘medical research’ instead of ‘clinical trial’. Sometimes, the use of scientific language was found to be intimidating or alarming, such as the term ‘genomics’. And even when these terms were explained, participants were still uncertain about the meaning of the term and lost interest.
Using an example of something that people already understand can be really helpful with explanations. Here are a few we came up with:
- Randomisation? It’s like picking out sports teams by flipping a coin.
- Clinical trial protocol? An instruction manual that every study site has to follow.
- Double-blind trial? Imagine both you and the researcher are wearing blindfolds as the treatments are handed out, so neither of you would know which treatment you got.
One study proved how effective metaphors can be, showing that their use can improve message acceptance, whilst also improving behavioural intention to participate in the trial at hand and increasing patient recruitment.
Did you realise how powerful your words can be? Patient enrolment and retention can be enhanced by explaining the study protocol clearly and simply.