Patient engagement in pharma – are we doing enough?
Patient engagement in healthcare and pharmaceuticals is often discussed but rarely executed in a way that genuinely benefits patients. While shared decision-making is now promoted as a best practice, it frequently falls short, with doctors not wanting to take accountability for patient-led choices, leaving individuals feeling unsupported rather than empowered. This is just one example but helps demonstrate the need to move beyond rhetoric and embrace true collaboration between healthcare expert and patient.
One fundamental issue that arises again and again is the way patient-facing materials often define individuals by their medical conditions. A diagnosis does not define a person, yet pharma and healthcare communications often reinforce this as an identity. This also applies to tone, as too many pharma communications focus on survival rates, side effects, and prognosis rather than on hopeful, real-world outcomes. Highlighting positive patient experiences—stories of resilience and full lives after treatment—can shift the narrative from fear to empowerment. This change strengthens relationships and makes healthcare feel less clinical and more human.
Another key challenge is reaching the right patient demographics. Social media is an important tool, but not all patients engage with healthcare information through these platforms. Instead of relying solely on Patient Advocacy Groups (PAGs), which attract a specific subset of patients, companies must diversify their outreach. Underrepresented voices—whether from different cultural backgrounds or less extroverted individuals—hold valuable insights that pharma often overlooks.
Artificial intelligence is also something we need to consider. Increasingly AI is shaping how patients learn about their conditions and some patients report that they found AI-generated responses, such as ChatGPT summaries, as informative as discussions with specialists. Pharma must recognize this shift and use this opportunity to integrate AI tools into their communications strategies. Whether through chatbots or content enhancements, AI has the potential to answer patient queries and provide insights into widespread concerns that companies may be missing.
Clearly, genuine engagement between pharma and patients could have many benefits for the patients themselves, but why should pharma commit to this shift? Well, unsurprisingly engaging with patients not only improves trust in pharma companies and their products, but it can also have significant impacts on clinical development. Involving patients in clinical trial design can accelerate processes, improves recruitment, and lead to meaningful protocol changes. Indeed, of all clinical trials in which patient involvement was a factor in study design, nearly half adopt modifications based on patient feedback, demonstrating the power of early collaboration.
Ultimately, patient engagement isn’t just a reputational issue; it’s a business necessity. Stronger patient collaboration accelerates drug development, improves trial efficiency, and enhances revenue. Defining a clear return on engagement can help pharma see the direct value of listening to patients. By moving beyond token involvement and embracing meaningful engagement, healthcare can build trust, improve outcomes, and ensure patients are truly heard.
