All patient-facing documents coming from pharma organisations are vital. They need to be clear, accessible, patient-friendly and have one aim in mind: to help the patient reach an informed decision about their health.

However, this reality regularly falls short. Many documents are dense, jargon-filled, and difficult to navigate. This leads to patient disengagement, confusion, and non-adherence. A lack of face-sensitive communication can make patients feel overwhelmed or patronised. Thus, there is less than optimal patient engagement. This is in direct contradiction to this sector’s pervasive messaging about elevating the Patient Voice.

In earlier articles, we used the lens of ‘face work’ to examine this discrepancy between the ideal and reality. We suggested the idea that the pharmaceutical industry generally believes that they meet this ideal in the points of contact between the organisation and the patient. This delusion - this belief that they are already doing the right thing - has to be the best possible explanation for the discrepancy. Otherwise, it is unthinkable that companies are doing this on purpose. There is no way that they deliberately set out to produce patient-facing information that fail their own patients.

There is no deliberate agenda behind this, no Dr. Evil-type character rubbing their hands with glee each time they cobble together another below-par patient-facing document. What, then, explains this discrepancy between how they think they communicate and how they do it in reality? The Occam’s Razor explanation could be that it is just a question of ignorance. This means a lack of knowledge, a lack of insight into their patients’ informational needs, into how to address patients, what tone to take, what level of information to include, how to tailor information to individual requirements.

Permeating all of this is a lack of awareness of Information Design. This is the common thread that weaves through all these holes of expertise. The world is awash with medical writers but finding one who truly knows how to communicate in lay terms to lay people is a very rare treat. By this, I mean, doing it well and doing it correctly. We make this statement fully armed with experience after experience of making this rather sad discovery, year after year, in country after country. It is not even a common problem: it is a standard shortcoming.

I can sense the sound of egos bristling.

This ignorance about Information Design is an industry-wide phenomenon. ‘Ignorance’ is a very loaded term in English, if not demeaning. I do not mean it in the English sense; I mean it in the original Latin sense of simply ‘not knowing’. Ignorance of something within a corporation can contaminate the management of knowledge across entire teams. You might be familiar with the Johari Window and the idea of known and unknown knowledge:

i) What you know that you know, i.e. your explicit knowledge of something. For example, I know about usability testing of eCOAs and I am very good at it (how is that for a cheeky advertisement?)

ii) What you know that you don’t know, i.e. your acknowledgement about gaps in your knowledge, where you know you are lacking expertise. For example, I know that there is a language called Estonian and I know that I don’t know any of it, but I also know that I could learn to speak it, if I wanted to.

iii)  What you don’t know that you know, i.e. tacit knowledge, things you do not realise you can do and do them subconsciously. There are lots of activities that we do everyday that we don’t ever think consciously about, such as typing without looking at the keyboard.

iv)  What you don’t know that you don’t know: unknown unknowns, blind spots or gaps in knowledge that you are completely unaware of.

Within the pharma industry, a lack of knowledge in Information Design should belong to category ii), i.e. “I know that Information Design exists. I know that I do not know much about it, even though it is relevant for my role. Therefore, I will learn about it.”

However, I strongly believe it is in category iv): they don’t know that they don’t know that there is something called Information Design that would help them in their work and they don’t know that they need to know about it. This is why I choose the word ‘ignorance’ very carefully and in a non-judgmental way.

This kind of ignorance becomes an institutional-wide issue: if the clinical writing team does not know that they don’t know, and their colleagues and bosses don’t know that they don’t know, and the upper hierarchy doesn’t know that it doesn’t know, then this becomes a team-wide, if not a department-wide, if not a sector-wide, problem. They build walls around themselves. They do not see. They do not hear. Sealing themselves within a blind spot cocoon, a cage of invisible ignorance, they assume that what information they do produce is simply… great. If they are doing everything according to their in-house best practice - which hardly ever coincides best practice in Information Design - then perhaps document failure could be blamed on the patient. The shifting of accountability could follow a logic as follows, only it is never openly articulated:

“It is the patients’ fault that they don’t understand, that they cannot bridge the knowledge gap. Surely, if they have been living with heart disease for a few years already, they must have picked up some domain-specific knowledge. The patients should be the ones to make the leap.”

There is a chasm between illusion and reality. It’s the gulf that separates what corporate messaging says is happening and what is actually the case: limited engagement and limited empowerment and limited decision-making.

Fiction and reality can easily be reconciled. Pharmaceutical institutions could become the stewards of patient empowerment instead of (unintentionally) erecting barriers. Designing information with the patient’s ‘face-sensitivity’ in mind from the outset could be key to bringing about more alignment between institution and patient.

The next article offers some small insights into how take face sensitivity into account in Information Design from the outset could lead to better patient-facing documents.

Thank you for reading!

Mark Gibson

Leeds, UK, February 2025

References:

Shaofeng Liu, Knowledge Management: An Interdisciplinary Approach for Business Decisions, Kogan Page, 2020