Nothing About Me Without Me – Observing National Patient Recognition Week

February 21, 2024

February 1st-7th, 2024 was National Patient Recognition Week. This annual observance provides an opportunity for reflection on the importance of partnership with patients in every aspect of care, from developing care-related goals to sharing in decision-making about a treatment or procedure. With the considerable knowledge patients bring to their care, it is critical to consider them members of the health care team. 

“Nothing about me without me” is the rallying cry of patient advocates who implore that care be provided in partnership “with” rather than “to” or “for” them. These advocates promote engaging patients in care through informed or shared decision making and collaborative goal setting. Patients who are engaged in their care are more likely to have improved satisfaction, decreased health care use, greater treatment adherence, and better emotional health.

Health care organizations are increasingly developing formal structures, such as patient and family advisory councils (PFAC), to engage patients in health care design and improvement. Recently,  Chester County Hospital noted an increase in complication rates among Hispanic mothers while a decrease was noted in the rest of the population. A multi-disciplinary team collaborated with the organization’s PFAC to gain the voice of the patient in better understanding the discrepancy. Through interviews and surveys conducted by advisors and  Hispanic volunteers, the team learned that Hispanic patients were not retaining knowledge and information upon discharge due to language barriers. Based on this feedback, a variety of interventions were implemented and complications for Hispanic patients were reduced. To learn more about Chester County’s journey, click here: https://www.youtube.com/watch?v=3mO7pIIEjtc

At HCIF, we have been honored to engage Patrick Gee, PhD, JLC, an incredible patient advocate, as an advisor for our Health Equity Data Strategy (HEDS) program. Patrick has spent his life advocating for the health and well-being of others.  As an individual who has experienced chronic kidney disease (CKD), Patrick uses his voice to stand up for those without a voice, particularly among disenfranchised communities of color. He serves as a patient advocate for a number of national organizations, including American Association of Kidney Patients, iAdvocate, and the National Kidney Fund, and shares his patient experience as a tool for educating, inspiring, and leading. Patrick’s contributions to the HEDS program have been invaluable.

Although National Patient Recognition Week has come to a close, here are a variety of ways to partner with patients every day:

  • Use decision aids with patients
  • Develop a shared agenda for patient appointments
  • Include patients and families in process re-design
  • Engage patients in reviewing patient education materials
  • Include patients and families in quality improvement activities 
  • Engage patients as faculty in training programs

Do you have other ideas about ways to effectively partner with patients?  Join our conversation here! 

 

Wendy Nickel, President

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