By Silke Schoch, Manager, Research & Programs 

Despite substantial interest in both real-world evidence (RWE) and patient engagement, examples of effectively engaging patients in real-world data (RWD) study development are rare. To pursue this nascent area of patient-centered research, the Pfizer–Bristol Myers Squibb (BMS) Alliance (Pfizer–BMS) partnered in 2019 with the National Health Council (NHC) and the Arrhythmia Alliance (A-A). The goal was to engage with people diagnosed with atrial fibrillation (AF) through an advisory board (AdBoard) to understand patient perspectives and enhance the patient centricity of future AF RWD studies in the short term and AF RWE in the long term.  

Specifically, the objectives were to: 

1. Better understand patient perspectives on living with AF and anticoagulant use for reducing risk of AF-related stroke,
2. Obtain patient input on outcomes considered important to patients with AFand gather feedback on endpoints commonly evaluated in previous anticoagulant RWD studies, as well as those being explored for future RWD studies), and 
3. Gain insights on opportunities to educate patients with AF and patient organizations about RWE understanding, generation, and use.

Findings from this Advisory Board include: 1) Heterogeneity exists in experiences and perspectives on living with AF, 2) We need to expand the focus on patient engagement in RWD study design and obtaining input on outcomes important to patients, and 3) Communicating in a health–literate way is critical for patient understanding and uptake of RWE. Other lessons learned during this advisory board are the importance of striving for diversity and the inclusion of representative populations when using advisory boards as the patient engagement method. 

You can read more about this case study in The Patient, where it was recently published as a research letter. You can access this research letter here.  

Reference: Oehrlein, E.M., Luo, X., Savone, M. et al. Engaging Patients in Real-World Evidence: An Atrial Fibrillation Patient Advisory Board Case Example. Patient (2020). https://doi.org/10.1007/s40271-020-00479-8