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The term "patient engagement" means different things to different people. When we say patient engagement, we mean the active and meaningful involvement of patients as leaders, advisors, consultants, and partners in the creation or improvement of healthcare innovation. This could include patients serving as partners in research, clinical training, health technology assessment/value assessment, medical product development, health policy, health information technology, and any other "room" in which healthcare innovation is happening.
No. The traditional concept of "patient engagement"--patients who are engaged and active in their own care or disease management--has been around for decades and goes by many names and terms. For example, Patient Activation Measures or "PAM" scores evalaute how engaged patients are in their care, and shared decision-making is a major component of this type of patient engagement. The type of patient engagement we do at ExPPect is a bit newer, with a significant boost in awareness due to the creation of the Patient-Centered Outcomes Research Institute (PCORI) in 2010. However, this type of patient engagement has historical roots in Community-Based Participatory Research (CBPR) and the modern patient advocacy movement brought about by groups like the Aids Coalition to Unleash Power or ACT UP.
Undeniably. While the concept of partnering with patients in the co-design of research, care delivery, and other healthcare innovation seems unusual to some, it may be the only established, and major industry that does not center itself on the experiences and needs of end-users. Patient partners bring the lived experience of illness or injury no one else can. The body of evidence is constantly growing, and the question has become not "does it work" but "which approaches work best?"