Patient Engagement rests upon the ability of people to access information. According to this ideal scenario, patients should have access to accurate, clear and timely medical information. ‘Access’ means having the information that is physically or electronically available, at hand, retrievable. This would include records, test results, doctor’s notes, depending on what is available in that health setting. For example, what a patient can have access to in the USA is very different to what they can see in the UK, although this is changing. In addition, this means product information – information about a drug or a device, a consent form, a patient information sheet, a label, safety information as part of a Risk Management. Access also means an ability to comprehend the information. A patient cannot make any kind of informed decision without understanding their diagnoses, treatment options and preventive measures.

That is the ideal, but the reality is that patients are routinely confronted with information containing medical jargon. Many health professionals routinely fail to communicate in lay people’s terms.

I often wonder if they talk in a medical register – the voice of medicine - in their home lives. I am imagining a Sheldon-type character from Big Bang Theory, only this person is British. And instead of…

fancy a cup of tea?,

do they ask:

Would you be inclined to partake in the consumption of a thermally regulated infusion of Camellia sinensis leaves, optimized for palatability and aromatic complexity?

Or at the wine aisle at a supermarket, do they turn to their spouses and, instead of saying…

 I can’t decide between the Lambrini and the Blue Nun,

do they say:

I am experiencing a cognitive impasse in selecting between two fermented grape-based libations, specifically the Lambrini—a perry-style, low-alcohol beverage—and the Blue Nun, a semi-sweet German wine, both of which exhibit distinct organoleptic properties.

Of course they don’t.

I can never understand why they have to stick to the medical register when communicating with patients, when they also are native speakers of the ‘voice of the lifeworld’. They are humans, not robots…at least not for now. The same goes for the writers of medical information, consent forms, package leaflets, Patient-Reported Outcomes, and so on – any discourse, any form of informational contact between the organization and the patient.

How they engage with patients is a choice: do they choose to widen or narrow the knowledge gap? Many choose to widen it because they are more concerned about maintaining their own credentials, authority and…egos… sadly.

We are living through an era of misinformation. The patient is already drowning in health information of varying quality. Just listen to any of the so-called manosphere podcasts: any crazy theory is given oxygen and fanned, reaching mass, global audiences. Misinformation and deliberate disinformation reach and lands with so many people because it fills a gap. It feeds a hunger that their physicians or their drug information has failed to satisfy. This is because the ‘official’ information is not usually timely or accessible. This is the opposite of engagement.

If patient engagement is to be meaningful, the first step must be to dismantle the barriers to clear, accessible information. Healthcare professionals and medical writers have a choice: to empower patients with simple, clear information or to alienate them with jargon. When official sources fail to provide timely, understandable information, false information fills the void. If we are all serious about patient engagement, then transparency and accessibility must be more than just principles. They must be standard practice.

Thank you for reading!

Mark Gibson

Boston, USA, November 2024