The biopharmaceutical sector continues to recognize the value of integrating the voice of the patient community into its activities.
Despite growing recognition of the importance of patient partnership within publications, uncertainty remains regarding how best to involve patients and where in the process this involvement should happen. Furthermore, although many of our colleagues working in Medical Affairs and publications have established the goal of engaging patients in publications, possibly as authors, their own internal guidance on publication development may create roadblocks. Compliance and regulatory concerns can limit opportunities to partner with patient communities, and the occasional reluctance of physician authors to include patients as co-authors further exacerbates the situation. Additional barriers arise from the general uncertainty in the scientific communications community as to how and when to engage patients in an appropriate manner that ensures a positive experience and recognizes the resource challenges of advocacy groups.
This paper will explore multidisciplinary perspectives on how we can better engage patient communities in publications to optimize the value of their contributions, while navigating any uncertainties and reluctance from internal and external stakeholders. We recognize that we are all learning together, with the shared goal of evolving our practices to fully embrace the voice of the patient while adhering to publication best practices and compliance. We welcome and encourage feedback from our industry colleagues to further refine our approaches.
