The patient engagement bandwagon continues to gain steam and it's pretty crowded these days. Entrepreneurs have (rightly) perceived that engaging and receiving positive feedback from patients is a key element of success. Organizations that purport to represent and benefit patients and families have an obligation to approach their work with a focus on learning from patients' lived experience with disease and care, and ensuring that their product/service/policy reflects such perspectives. It's ironic, then, that policy-making bodies often fail to do this hard but crucial work, leading to misguided decisions that affect patient-clinician decision making, access to appropriate therapies, benefit design and effective care delivery.  Notable exceptions can be seen in FDA and PCORI efforts, but the general environment breeds fear and mistrust within the most vulnerable patient communities. Such a dynamic forever prevents dialogue about trade-offs and solutions based on real-world experience. We are beginning to see the light on the role of social determinants of health, the (better) investment in preventative care and the promise of precision medicine. With all of this hope, let's recommit to the guiding principle that the question "how does this benefit patients?" is central to all decisions.