Pharmaceutical companies claim to prioritise “patient engagement” and the “patient voice,” using these terms in mission statements, corporate reports, and PR campaigns. This creates an expectation that they are deeply invested in patient needs. In reality, most fall short of true engagement.

Rather than genuine collaboration, pharma and CROs often treat patient engagement as a marketing tool or a regulatory box-ticking exercise. Patients - people like us - who should be central to drug development are frequently ignored, tokenised, or consulted too late and too superficially. This creates a disconnect between industry rhetoric and real patient experiences, leading to distrust, poor medication adherence, and worse health outcomes. These issues are hard to course correct.

This article explores how pharma sometimes fails at patient engagement, the consequences of these failures, and what must change to ensure patients are truly heard and involved in shaping the medicines that affect their lives.

Symbolic Engagement, Not Meaningful Inclusion

Pharma often forms patient advisory boards, conducts surveys, one-to-one interviews and focus groups. While these initiatives seem patient-focused, they are often symbolic rather than meaningful. Companies sometimes select agreeable participants who align with their messaging rather than engaging diverse, critical, or underrepresented voices.

Even when patients provide valuable insights, these are often ignored in drug development. After giving input, patients rarely see transparency about how their feedback is used, leading to disengagement and disappointment. Patients may be reimbursed, but it is not the primary motivation. They ‘lend’ their voice to help, not for payment. They should be respected.

Many pharma-led “patient support” programmes prioritise brand loyalty over genuine patient outcomes. Patient Assistance Programmes provide access to medications but sustain reliance on high-priced drugs rather than addressing affordability. Social media campaigns use patient stories to promote drugs while maintaining controlled narratives. Similarly, disease awareness initiatives, though seemingly educational, often serve to boost demand for a company’s own medications rather than provide unbiased health information. Even standard activities like COA development or lay input into patient education are framed as “patient engagement” when they are simply routine processes. This can be misleading.

Systemic Issues in Patient Engagement

More serious systemic issues persist. Pharma prioritises stakeholders - scientists, investors, and regulators - over the patients who rely on their medications. Excluding patients from clinical study design results in trials optimised for regulatory convenience rather than real-world feasibility. This leads to poor recruitment, high dropout rates, and a lack of diverse representation. Excess paperwork and travel demands further make participation difficult.

Pharma also downplays side effects, limiting patients’ ability to make informed choices. Post-market surveillance lacks meaningful patient input, meaning safety issues are often identified too late. When it comes to affordability and access, their commitment to patient well-being is questionable: high drug prices, patent manipulations, and opaque pricing structures keep life-saving treatments financially out of reach for many.

This is not a diatribe against pharma. As a company, we subsist on pharma. It is an objective look at the industry’s shortcomings. Many sincere, talented individuals work in patient engagement, yet some are unaware of how superficial practices can damage patient trust. Patients are, after all, the primary stakeholders—not doctors, regulators, or investors. So, how can this be fixed?

Walking the Talk

If pharmaceutical companies truly prioritise patient engagement, they must go beyond surface-level efforts and make systemic changes. One key step is involving patients in drug development from the start. Patients should co-design clinical trials to ensure they reflect real-world needs, making participation more accessible and relevant. Recruitment must be more inclusive. This should not be forced diversity, but a reflection of the real world. Patient engagement cannot come from a homogenous group that mirrors the demographics of the clinical study team. This is data collected and viewed through a prism of privilege.

Transparency is key to trust. Pharma must fully disclose side effects so patients receive unfiltered risk information. Real-world data collection should be prioritised, ensuring active patient feedback post-approval to refine treatments. Companies should also publish how patient input influences decisions, moving beyond PR-driven engagement.

Pharmaceutical companies claim to prioritise patient engagement, but their actions often tell a different story. Excluding patients and prioritising profits over access has real consequences for millions. It is time for the industry to move beyond rhetoric and embrace real change. True collaboration, transparency, and fair pricing that ensures treatments are accessible and patient-centred.

Patients are not just consumers; they are the reason the pharmaceutical industry exists. If pharma truly wants to regain public trust and make a lasting impact, it must take the Patient Voice seriously and not just when it suits them.

Thank you for reading!

Mark Gibson

Boston, USA, November 2024