Abstract
Dear Colleagues,
Welcome to Volume 2, Issue 2 of Journal of Patient Experience!
This issue reinforces two concepts that I want to highlight. The first one is about including patients in nearly all we do – we spoke about this in the first issue. Now, we are moving from putting patients at the center of all we do (as a lofty concept), to recognizing the future is in partnering with patients to design care that will touch all of us.
Many organizations have patient advisory councils up and running which is one way to engage patients and their loved ones. I used to run these for our healthcare system and wanted to share a story with you to drive home the concept. We had brought our admissions packet to the council for their review and suggested edits. As with any admission packet, they had a lot of suggestions we hadn’t thought of. At the end of the meeting I said something to the effect of “OK – I’ll get to work on these. I probably won’t be able to turn them around for another month or two.”
Next thing I know, one of the patient advisory council members, Patti, said “Well, why would you do that? We’ll divide up the sections and rewrite them.” I can’t even describe to you that moment. I felt as though the skies were parted and I understood for the first time that the idea that we (as caregivers) have all the answers was outdated. That patients and families weren’t just people we went to visit to get their opinion every now and again but could be partners in the work itself. This is embodied in “Implementing Patient Family-Centered Care Grand Rounds using Patient/Family Advisor Narratives.” (Fagan, M, Wong, C, et al).
The second topic is about the idea that most of us are impacted by suffering in a variety of ways. It’s not usually just one – in the piece “I had cancer for 45 years,” Marilyn Schneider speaks to cancer touching her life and the lives of her family and friends. And the reason I just chose the word suffering is because it also expands way beyond healthcare and yet can profoundly impact care and healing. This article brought to my attention the notion that we really have no idea how many times cancer has touched someone’s life. We only know this if we take the time to ask, review the medical record, or have an existing relationship. I recently joined a family member’s appointment in oncology and every question that came out of my family member’s mouth was rooted in their prior experiences of loss from cancer. I wondered if the clinicians knew we had already walked this road and if they didn’t, how would their language be different? Food for thought…
As for some nuts and bolts, we are digital and have partnered with SAGE Publications! It’s an enormous step forward in our journey as a journal that strives to bring you research and ideas that are relevant to your work in a format that matters.
If you’d like to get in touch or have a perspective to share, please reach out to me at:
“Twice Broken Heart” a jacket for Shelley Cohen Konrad by Regina Holliday ©2013
Regina Holliday is a Maryland-based patient advocate, artist, speaker and author known for painting a series of murals depicting the need for clarity and transparency in medical records. This advocacy mission was inspired by her late husband Frederick Allen Holliday II and his struggle to get appropriate care. Her artwork became part of the national healthcare debate. Regina regularly paints and speaks at medical conferences throughout the world.
She also started the “Walking Gallery” movement, where more than 350 volunteer members wear patient story paintings on the backs of their business suits when they attend healthcare conferences. The jackets, which were painted by Holliday or one of 42 artists, depict the story of a patient or an element of medical advocacy. These jacket paintings combined with the tools of social media have spread the word about the importance of the patient’s voice in healthcare discussions. She recently wrote a book “The Walking Wall: 73 Cents to the Walking Gallery.” For more info about the Walking Gallery or Regina’s work, please visit http://reginaholliday.blogspot.com/