Patient leadership in the reporting of clinical trials and medical education is still overdue. There are many reasons why patients should be included, not just as token participants, but as integral contributors; this ensures that medicines are developed with data that truly support their needs. However, there remains a significant gap between the ideal and reality beyond mere lip service. A major reason for the reluctance appears to be due to fear surrounding patient engagement and compliance interpretations.
The Myth: Compliance as a Barrier
A common misconception is that compliance regulations act as a barrier to meaningful patient involvement. Concerns about what it means to promote medicines directly to the public often lead organizations to shy away from fully engaging patients in scientific discussions and communications. However, involving patients in agenda development, reporting their stories, and ensuring that messaging about new treatments reflects their reality is not the same as promoting of medicines to the general public.
The Reality: Compliance Supports Patient Engagement
At the International Society for Medical Publication Professionals (ISMPP) EU meeting, a representative from compliance expert Code Clarity provided an alternative view, stating that compliance is not an obstacle to patient engagement. Patients should have access to scientific congresses at which they can learn about advancements in their disease areas, participate on panels discussing new treatments, and contribute meaningfully to shaping the content of these meetings.
Simon Stones, representing the European Alliance of Associations for Rheumatology (EULAR), provided an exemplary model by demonstrating how patients are involved in EULAR planning meetings—not merely as symbolic figures, but as genuine leaders driving change. EULAR has also considered measures and funding to ensure that patients can attend their scientific meetings and access new information.
Moving Forward: Embracing Patient-Centric Collaboration
As medical communicators, it is our responsibility to collaborate proactively with pharmaceutical partners to consider at what points patient engagement will be most valuable. Before engaging with patients, we need to put together a clear plan for this collaboration to ensure that it is truly mutually beneficial and goes beyond tokenism.
Beyond compliance, effectively involving patients in scientific congress activities requires meticulous planning and thoughtful consideration. Key aspects to address include venue logistics, accommodating patients’ time and accessibility needs, covering costs for carers attending events, and ensuring that content is accessible to patients who may be familiar with disease-specific terminology but lack formal academic training. By continuing to address these factors, we can foster environments in which collaboration is truly inclusive—empowering all patients in this era of medical advancement in which self-management and choice are central.
Ultimately, bridging the gap between myth and reality requires us all—health communication agencies, pharmaceutical companies, patient advocacy groups, and healthcare professionals—to embrace innovative approaches that prioritize authentic patient engagement at every level.
Regardless of focus, we believe that the patient should be at the heart of every story we tell. We aim to understand the world through the eyes of the community to uncover the beliefs and motivations that affect health outcomes. We develop effective patient engagement strategies that ensure patients’ voices and needs are heard and are at the core of every communication.
So the question is, how are you currently embedding patients in your medical communications, and can you take it one step further?