PATIENT

Promoting Agency Through Innovative Education and Networked Teams (PATIENT) PATIENT is a pioneering patient-run research program focusing on patient agency in research (PAIR). We delve into aspects like health literacy, participation in decision-making, and long-term engagement and communication within research teams. Our goal is to enhance the role of patients in research, ensuring that their voices and perspectives are not just heard but are integral to shaping the direction and outcomes of studies.

Join us in this exciting journey as we redefine the role of patients in research, turning participants into partners and passive subjects into active contributors. Your involvement and insights are not just valuable; they are essential to the success of medical research.Welcome to our webpage dedicated to exploring Patient Agency in Research (PAIR). At the heart of our research is the understanding that patients play a crucial role in the success of medical research. Our focus is on empowering patients to be active partners in research, a concept we call PAIR, grounded in the theories of renowned psychologist Albert Bandura.

What is Patient Agency in Research (PAIR)? PAIR is about the capacity of patients to actively shape their participation in research. It’s based on the idea that patients aren’t just subjects in a study; they are partners with the ability to influence the research process. This concept extends the work of Bandura (2006, 2018) and Code (2020, 2022), offering a fresh perspective on how patients engage with and impact research.

How is PAIR Exercised? PAIR manifests through four key functions:

  1. Intentionality: Patients set intentions, including action plans and strategies for their involvement in research.
  2. Forethought: This involves setting goals and anticipating the outcomes of their actions, which guides and motivates their engagement.
  3. Self-Reactiveness: Patients actively plan and regulate their involvement in the research process.
  4. Self-Reflectiveness: Patients engage in self-examination, assessing their participation and making adjustments as necessary.
Patients can exercise their influence in three main ways:

Project Team

Jillianne Code, PhD

Principal Investigator
Person with Lived Experience

Heather Lannon, DSS

Postdoctoral Research Fellow
Person with Lived Experience

Made possible with funding from

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