Pharmaceutical companies and Contract Research Organisations (CROs) believe they play a pivotal role in patient engagement, particularly in clinical research and healthcare innovation. These organisations have the power to nourish the patient voice through high-quality information provision, ensuring that patients are informed, respected, and empowered in their healthcare decisions. Yet, in practice, many industry-led communication efforts lead to disengagement, mistrust, and hesitancy among patients.

There is a clear discrepancy between the ideal scenario and the reality of information provision. The industry largely believes that the quality of information, especially written materials, is fine. Isn’t best practice what they already do? However, the patient’s reality is very different.

This article looks at this discrepancy and how shining a light on face work can reveal overlooked areas that influence whether a patient engagement initiative is a success or a failure.

The Ideal #1: The Patient Voice Should Be Engaged and Nourished

Patients need clear, accessible, and comprehensive information about clinical trials, medications, and treatment options. This should be free from jargon and tailored to individual literacy levels, communicating risks, benefits, and uncertainties openly. Patients should be given adequate time and support to process information and ask questions.

When viewed through the lens of face maintenance, patients engaged in this way feel respected rather than overwhelmed or patronised. The designers of communication strategies would use positive politeness to encourage engagement and acknowledge the patient’s contributions as valuable.

The Ideal #2: Patient-Centred Communication

In this ideal scenario, organisations communicate with patients, not at them, ensuring that their voices shape decision-making. This allows patients to be engaged in a two-way conversation rather than passive recipients of information. Cultural and linguistic diversity are considered, with materials adapted for different populations. Feedback mechanisms allow for meaningful patient input in drug development and trial design.

Patients’ autonomy is respected by enabling them to feel in control of their participation. Strategies of negative politeness lessen face-threatening acts, such as assuming they already know something rather than asking if they need more information.

The Reality: A System That Discourages Patient Engagement

Many professionals working in CROs and pharmaceutical companies assume that the information they provide represents the ideal, namely clear, best-practice communication designed to empower and engage. The reality is far from this. When this is pointed out, it often causes dissonance and denial. A response I received recently when suggesting that a trial consent form could be improved was paraphrased as follows:

But this is how we have always provided this form, and no patient has ever said anything.

That is precisely the point!

If patients have not given negative feedback, it is because they do not feel empowered to do so. Challenging those who recruited them onto a trial is a face-threatening act. Why rock the boat when they feel they have no agency?

Patient engagement is often hindered by poor communication, which directly impacts patients' willingness to engage and maintain their dignity, or "face," in interactions with the industry.

One of the most pervasive problems with patient-facing information is the overuse of complex, impersonal, or misleading language. Medical jargon dominates materials, making it difficult for laypeople to understand critical information about their conditions and treatments. Regulatory disclaimers - though necessary -often overshadow clarity. Patients become more confused than informed about the risks and benefits of a given treatment.

Marketing interests and legalese further complicate the landscape, leading to messages that overpromise benefits or relegate concerns. These practices have a profound impact on how patients maintain face in medical encounters. When confronted with technical language they do not understand, patients may feel intellectually inadequate and disengage rather than admit their confusion. Many avoid asking necessary questions for fear of appearing uninformed.

Traditionally, the pharma industry has relied on one-way communication that only superficially involves patients. Everybody subscribes to rhetoric around patient-centred approaches, yet engagement often remains superficial. Feedback mechanisms are a formality rather than a meaningful avenue for patient influence.

This is the problem with patient-facing materials: they could and should be an opportunity to engage with patients. Instead, they receive something uninviting, often still in paper form, that they rarely read. It is not just the wording that repels attention. It is in the presentation, too. One message is crystal clear to patients when they receive poor quality information from a CRO or a pharma company: we do not care all that much about your patient voice, even though we pretend we do.

Far from being equal partners, patients are often reduced to data points. This reinforces a knowledge gap based on an imbalance of power, limiting their ability to shape the very treatments meant for them. These practices create face-threatening interactions where patients feel ignored, tokenised, or dismissed. Without real participation, patients struggle to feel respected and valued.

Beyond communication issues, a deep-seated distrust in the pharmaceutical industry persists, particularly among vulnerable and hard-to-reach communities. Some have good reason to be sceptical. The clinical study industry has a legacy of unethical medical trials, lack of informed consent, and exploitative research practices. With each poorly authored piece of information, goodwill towards clinical study involvement erodes. Trust is violated when patients feel coerced or misled.

Without full transparency, participation feels like a risk rather than an opportunity, making future engagement even less likely. Cultural insensitivity further exacerbates these concerns, discouraging participation from diverse groups who already feel unseen or disrespected by mainstream medical institutions.

The disconnect between how CROs and pharmaceutical companies perceive patient engagement and the reality of patient experience is stark. Addressing these gaps requires more than refining communication strategies. It demands a fundamental shift in how patients are valued, involved, and respected in research and treatment development. Clear communication, genuine partnership, and increased trust between industry and patients are the only ways to move closer to the ideal the industry so often assumes it has already achieved.

Thank you for reading!

Mark Gibson

Boston, USA, November 2024

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