Engaging the Patient: Patient-Centered Research

  • Lorraine B. JohnsonEmail author
  • Jaye Bea Smalley


There is a growing mandate for patients to play a role in the design and conduct of research to develop and assess drugs, devices, the healthcare system, and other health services and interventions. Often, patient engagement is conceived narrowly as the patient’s willingness and ability to participate in his or her care through patient engagement interventions that encourage patient participation. However, since most drugs, devices, and the healthcare system more broadly have not traditionally been developed with the patient perspective in mind, there is a growing consensus that patients should play a more active role on research teams to ensure that the perspective of the patient is represented and understood. To realize the promise of a patient-centered healthcare system, outcomes important to patients must be foundational. Accordingly, those outcomes should inform research to ensure that the technologies, interventions, and healthcare evidence are implemented into guidelines, policy, and ultimately care. This promise could potentially be realized if patients are centrally involved in research as part of the research teams and recognized as uniquely situated to provide the expertise of lived experience.


Patient centered Patient engagement Empowered patients Patient representatives Patient partnership Arnstein’s ladder Patient-driven research Codevelopment Cocreation Patient-powered research Patient experience Bidirectional communication 


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© Springer Nature Switzerland AG 2019

Authors and Affiliations

  1. 1.LymeDisease.orgSan RamonUSA
  2. 2.Global I & I Patient Advocacy and Life Cycle ManagementCelgene CorporationSummitUSA

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