Individual/Family and Community-Engaged Practice and Education

Since 2018, the National Center has included “super” patients and patient advocates who have substantial experience with the United States healthcare system because of hereditary and chronic diseases in their own lives or in the lives of loved ones. Through their intense and long-term experiences as recipients of “care”, they are keen observers of what works and doesn’t work, how they have been engaged and respected (or not), whether their care is coordinated, and if their health professionals are truly a “team” – one that they are on.  In 2018 and 2019, the super patients have attended Nexus Summit sessions to provide patient perspectives and feedback. In 2020 and 2021, these individuals are key advisors on Nexus Summit programming, plenary presenters, and serve as Track Leaders to help guide learning for Summit attendees.

The seminars and posters selected for this track represent IPE that has been described as focusing on health and individual, family, and community outcomes.  In some cases, learners (students, residents and clinicians/health professionals) are actively involved with these individuals and families, in other cases, they are not. In their descriptions, some strive to move beyond patient-centered care to engage individuals and families in their care as true members of the team. 


Learning Objectives:

By participating in the Patient Track, you will be able to:

  1. Describe how the presenters have designed and implemented their IPE programs with individuals, families, and communities in mind
  2. Discuss how the track leaders reflect upon the individual, patient or family voice and how individuals are engaged in education and practice
  3. Explore opportunities to reconsider concepts of patient centeredness and evolve new strategies for improving patient-provider engagement.
  4. Articulate how lessons learned can be adapted to your own IPE programs and work back home.


 Reflective Questions:

  1. How is the IPE program and work informed by individuals, families and communities?  Were patients engaged as “members of the team”?  And if so, what were their roles?
  2. How does this work address diversity, disparities, and health equity?
  3. What good practices were observed in the featured presentations?
  4. During Summit discussions, what do the individuals and families have to say?
  5. What are you learning about how to create opportunities for the individual, family, and community engagement in your own IPE programs and work?



  • Churchill, L. R., Fanning, J. B, & Schenk, D. (2013). What Patients Teach: The Everyday Ethics of Health Care. New York: Oxford University Press.
  • Morris, D. (2014). Medical Errors: Caregivers, loss, and an ethics of waiting. Literature and Medicine, 32(2), 249-270.
  • Josiah Macy Jr. Foundation (2014).  Partnering with Patients in Education and Health Care Transformation: Featuring the University of Montreal.
  • Fulmer, T & Gaines, M. (2014) Partnering with Patients, Families, and Communities to Link Interprofessional Practice and Education. Proceedings of a conference sponsored by the Josiah Macy Jr. Foundation in April 2014; New York: Josiah Macy Jr. Foundation.