ISPEP releases white paper questioning pharma’s patient engagement promises
KEY TAKEAWAYS
- ISPEP’s white paper argues that pharmaceutical companies must move beyond superficial patient centricity to establish genuine, long-term collaborative relationships.
- ISPEP presents 5 strategic recommendations to transform how industry engages with patients throughout drug development lifecycles.
The International Society for Patient Engagement in Publications (ISPEP) has published a white paper challenging pharmaceutical companies to honour their commitments to meaningful patient involvement. Authors Chris Gray, Rob Wyer, and Steve Clark argue that while many organisations have embraced patient-centric rhetoric, implementation often falls short and risks alienating the very people it aims to support.
The authors highlight a growing disparity between pharmaceutical companies’ public commitments and patients’ experiences. Survey data reveal a stark perception gap: while 72% of industry employees agreed with the statement “My company communicates with care and compassion, transparent and unbiased information on diseases, treatment options, and available resources”, only 32% of patients agreed.
“Survey data reveal a stark perception gap: while 72% of industry employees agreed with the statement “My company communicates with care and compassion, transparent and unbiased information on diseases, treatment options, and available resources”, only 32% of patients agreed.”
The authors highlight that regulatory authorities are ahead of pharma when it comes to patient engagement: both the Food and Drug Administration and European Medicines Agency expect patient involvement in the drug development process and consult directly with patient groups and individuals.
Five strategic priorities for revolutionising patient collaboration
The white paper presents a comprehensive framework built around 5 key recommendations:
- Maintain continuity across the lifecycle
Organisations should ensure lifecycle continuity by establishing sustained partnerships that transcend departmental boundaries. Many companies fail to maintain relationships once specific studies conclude, despite patients requiring ongoing support. In addition, patients may become frustrated when requests come from multiple departments.
- Build a legacy
Companies should establish enduring impact through collaborative, multi-sponsor initiatives that protect patient communities from development setbacks or shifting corporate priorities.
- Elevate patient advocacy
Pharmaceutical companies must champion patient representation internally by embedding patient perspectives within core business strategy with executive leadership backing.
- Measure and report progress
Companies should implement robust systems to track and communicate outcomes using comprehensive evaluation frameworks that combine qualitative insights with quantitative metrics.
- Challenge, reinterpret, and rewrite SOPs
Finally, organisations must reform standard operating procedures (SOPs) that may inadvertently restrict meaningful patient collaboration.
The authors conclude that as patients are the end users, they ultimately determine the success of new therapies. Developing and maintaining patient collaborations will help to overcome the disconnect between patient and pharma needs and improve outcomes for all stakeholders.
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