Patient-Partners as Educators: Vulnerability Related to Sharing of Lived Experience

Introduction to the Issue: Vulnerability Experienced by Patient-Partners

Imagine you just received a chronic illness diagnosis. You can feel the blood rushing out of your body, time stopping, air escaping your lungs, and you going numb. The days that follow are void of any happiness or desire for social interaction until you learn more about the diagnosis that is now a part of your identity. Over time, you learn to live with it, even embrace it, and you find your voice again; you develop the desire to share with the world what it is like living with this chronic condition on a daily basis, hoping to empower the next generation of healthcare providers to be patient advocates. You become a patient-partner.

To ensure the healthcare system is centered on understanding, care, compassion, and humanness, it is important to incorporate patient-partners in health professions’ education. Patient-partners share their lived experience to provide an opportunity for learners to reflect on and learn with, from, and about each story to enhance their patient-centric skills. ¹ Simultaneously, patient-partners experience a sense of pride in their civic contribution by knowing that their lived experience can enrich health professions’ education and care delivery for future patients. ²

Now imagine that you are standing in front of a room filled with learners and sharing your vulnerable life moments as a patient-partner. It took days, months, or years for you to develop courage to formulate and organize your thoughts, feelings and empower yourself that sharing your story can be important. You divulge your whole self through your story and stand alone, awaiting their response and connection to what you just shared. Eventually, a hand is raised and the words that follow discredit your lived experience. Your heart sinks and you have an uneasy feeling. You start to doubt yourself and feel like your experiences do not have any value.

Two patient partners, who are also authors of this manuscript, met at a patient-partner event where Kateryna presented their self-constructed poetry detailing their experiences as a patient interacting with an interprofessional team ³ . Subsequently, an audience member provided feedback on the performance that bordered as being criticism of Kateryna's experience. While Kateryna was able to formulate an immediate response to the critique, it left her paralyzed for months from writing more poetry or engaging in further patient-partner events in education.

Jennifer, who was an audience member at the event, “felt the attack” because she too underwent a similar situation when sharing her own illness story. After the event, Kateryna and Jennifer connected through Zoom to share in their collective experience. Jennifer divulged undergoing depressive symptoms at the onset of her condition. Jennifer was labeled as a “frequent flyer” due to her multiple encounters with the healthcare system. These symptoms were often minimized by the interprofessional team until it was determined that Jennifer had encephalitis, resulting in seizures and profound retrograde amnesia. Jennifer published a book chapter on the trauma and transformation she experienced living with this condition. ⁴ However, some readers’ responses included comments that centered on Jennifer blaming everyone around her, but herself for her illness trajectory. The feedback sounded like these readers were suggesting how Jennifer should re-write her own illness story. These audience interactions brought Kateryna and Jennifer together to dialogue about how they can better the experience for themselves and future patient-partners to continue to enrich health professions’ education.

Key Factors for Consideration

Both patient-partners felt like others did not hear their story, and instead, their story was being scrutinized. Through their shared feelings of vulnerability, Kateryna and Jennifer came up with questions for consideration when working with patient-partners to facilitate health professions’ education:

How do patient-partners decide on whether they are ready to share their stories?

Recommendations

Influenced by Osgood-Schramm's model of communication, ⁵ the authors reflected on effective ways the sender (patient-partner), receiver (members of the audience), and facilitator (event host) can work together to address feelings of vulnerability that may be experienced by patient-partners. This resulted in original model modification giving rise to Figure 1 that the authors self-constructed. This revised model depicts disruptors and facilitators in patient-partner encounters. The top half illustrates potential disruptors (ie, sharing stories prematurely and audience members asking personal questions), whereas the bottom half of the model explores facilitators in the sender-receiver model (ie, sharing “healed” stories, encouraging audience members to ask questions that provoke critical thinking). Overall, the interplay between the sender, receiver, and facilitator in both effective and ineffective situations is exemplified.

OPEN IN VIEWER

Figure 1.

Sender-receiver model of communication for patient-partners encounters.

Conclusion

Kateryna and Jennifer experienced vulnerability in sharing their story, having received feedback that negated their lived experiences as patients. Their desire and passion to share their lived experience, through poetry, presentations, and publications were severely impacted by feedback that was provided by audiences. They were left alone to process this feedback and the experience led to feelings of anxiety about how others may receive their lived experiences in the future.

Through this dialogical and reflective process on their shared vulnerability, Kateryna and Jennifer expressed that they are willing to try to share their stories once again under the right conditions and with appropriate processes in place. Such processes include patient partners receiving support from facilitators in differentiating whether their stories are scars or wounds, briefing students on critical thinking questions versus personal attack questions and creating pre-session brief for the audience and post-session brief for presenters. Future research should examine the effectiveness of briefing and debriefing sessions, explore the role of facilitators, and enhance the patient-partners’ decision making abilities pertaining to stories they choose to share. Ultimately, sharing stories of illness can be extremely valuable for patient-partners to make sense of their experiences, but also for audiences to learn with, from, and about them.