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Stories are powerful because they foster human connections, transparency, and innovation, ultimately leading to better experiences for those giving and receiving care. Healthcare workers’ perspectives are critical to creating a shared vision of health care that better prepares us for the future and is more responsive to our collective needs and values.

This article authored by the American Institutes for Research Patient-Centered Measurement Team*

We thank you, the doctors, nurses, physician assistants, respiratory therapists, pharmacists, other allied health care professionals, environmental services, support staff, and many other frontline health care workers for the infinite courage and compassion that you are showing—morning, day, and night—in caring for those affected by COVID-19. It is hard to imagine—let alone understand—the emotions and impacts on your daily lives that you and your loved ones are experiencing during this pandemic. You have our utmost gratitude and respect!

We are a team of patients, caregivers, researchers, and advocates for patient- and family-centered care (PFCC). Through our partnership with each other—and with patients and caregivers, measure developers, and health care providers—we have learned a lot about the power of inviting, sharing, and listening to diverse, lived experiences. As our country and countries across the world begin to heal and rebuild from the COVID-19 pandemic, we believe that these lived experiences, or stories, will help us heal, build solidarity, and move forward together. Your perspectives—as well as those of people who have experienced COVID-19 and their families—are critical to create a shared vision of health care that better prepares us for the future and is more responsive to our collective needs and values.

Through our work and lived experiences, we have seen the power of partnerships among health professionals, patients, and families in redesigning care, research, and measurement. Stories bring new meaning to our work and are essential to creating equal partnerships that result in innovative solutions. In return, equal partnerships help create a culture of mutual respect that invites diverse experiences and perspectives without judgment. We have learned that stories are powerful because they

  • foster human connections and build trust by evoking empathy and compassion for others;
  • provide insight into diverse perspectives and experiences, setting the stage for innovation and creativity;
  • promote transparency by helping to understand what matters most to people and why;
  • shift the power dynamic away from “us versus them” by identifying common ground and goals and renewing commitments to what matters most; and
  • ultimately, lead to more meaningful experiences for those giving and receiving care.

Regardless of our backgrounds and experiences, stories connect us as human beings and remind us of why we got into health care, which is to help people live healthier lives that allow them to do the things that enrich their lives. In today’s digital world, it has become easier than ever to share stories. Whether it be a blog post, journal or editorial article, podcast, letter to your representatives, or a social media post – there are a plethora of ways to share your story with a range of diverse audiences. In fact, presently the Society of Participatory Medicine (SPM) and the Health Story Collaborative (HSC) have partnered to share some of these stories through their blog. They are welcoming poems, essays, visual art, music, audio clips, or any other medium you choose to share stories about coping, navigating, and just being during these challenging times.

Regardless of the platform you choose, we stand ready to listen and learn from you—and, more importantly, we are ready to partner with you—when you are ready to share your stories. It may not be easy to share your stories. In fact, it may be uncomfortable for both those sharing and hearing the stories. But know that you are a valued partner and should have an equal voice with patients, caregivers, and others in reimagining the health care system. Until then, thank you and please stay safe!

*About the Authors: In June 2018, the American Institutes for Research (AIR), with support from the Robert Wood Johnson Foundation (RWJF), funded four small-scale pilot projects that demonstrate how to implement the five principles of patient-centered measurement in real-world settings. Members of the AIR team who contributed to this blog include Hala Durrah, MTA, patient- and family-centered care advocate, speaker, and consultant; Karen Frazier, PhD, senior researcher; Stephen Hoy, chief operating officer, PFCCpartners; Mary Lavelle, MS, PMP, senior researcher; Dilani Logan, MSc, research associate; Ellen Schultz, MS, senior researcher; and Lee Thompson, MS, senior researcher.


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