These thoughts I share here capture the essence of the article, the full text of which, you can access directly (and gratefully) from BMJ here: Lived experience matters: transforming healthcare through kindness and collaboration
As I have reflected on where we have been from when I first wrote this article this time last year, and where we stand at the mid-point of a year that has seen so many twists and turns in our social and political worlds, these points felt critical in his moment. I hope some resonate with you.
The lived experience we have shapes us, it guides us. An appreciation of the lived experience others bring to healthcare, as patients, care partners, or colleagues, is a critical lens that everyone must not only see through, but also act on. Lived experience is what informs us and inspires us, and it was my lived experience that in many ways inspired what was to become The Beryl Institute as you experience it today.
For those that may not know of The Beryl Institute, we are a global community of healthcare professionals and experience champions committed to transforming the human experience in healthcare. As a pioneer and leader of the experience movement, the Institute offers unparalleled access to unbiased research and proven practices, networking and professional development opportunities and a safe, neutral space to exchange ideas and learn from others, all grounded in the lived experiences of our community.
While the term “lived experience” has become more prevalent in the common vernacular today, it is important to frame what we mean. The simple but powerful definition of lived experience I use is “knowledge based on someone’s perspective, personal identities, and history, beyond their professional or educational experience.”[1] Lived experience is not a passive concept. It is not “just” knowledge. We must acknowledge that perceptions are formed, choices are made, and actions are taken because of knowledge gained through lived experience. When we bring the idea of lived experience to healthcare, to the most vulnerable moments in many people’s lives, this idea rests at the heart of what matters.
Lived experience should guide the actions of healthcare organizations, as it informs those who come to them each day seeking care. This is REAL DATA, that can educate us for safer choices, more informed decisions, greater compassion, and ultimately better outcomes. The idea of experience overall as a foundational part of healthcare is not a “nice” concept, but rather an essential element in realizing the value we seek to achieve for our workforce, and organizations, communities and patients and care partners.
Lived experience should guide the actions of healthcare organizations, as it informs those who come to them each day seeking care. This is REAL DATA, that can educate us for safer choices, more informed decisions, greater compassion, and ultimately better outcomes.
I believe the foundational value that drives a commitment to lived experience is one not based on transactional process, but in relational intent. It stems from the very idea of collaboration central to the idea that in healthcare we are human beings caring for human beings. This idea of collaboration is also the primary value on which The Beryl Institute has been grounded since day one, over 15 years ago, as a membership community committed to transforming the human experience in healthcare.
It is also the foundational commitment in the Declaration for Human Experience crafted through the voices of The Beryl Institute community amid the pandemic, which states, we must “collaborate through shared learning within and between organizations, systems, and the broader healthcare continuum to forge a bold new path to a more human-centered, equitable and effective healthcare system.”[2]
The idea of collaboration is not novel, but it does require commitment, the willingness to be vulnerable, and with open and clear intention. I also acknowledge that in healthcare there remains a sense of competition at times that has people seek to pull back from collaboration versus step into it. My challenge remains that in the willingness and capacity to be open, share lessons learned, and reveal roadblocks faced and challenges overcome, you are not giving away secrets, but contributing to the global effort to transform healthcare. If you want to compete in healthcare today, I challenge you to do so on a commitment to execution, not on the holding close of ideas you believe to be secret. I offer again as human beings there are no secrets to doing what we know is right in healthcare.
If you want to compete in healthcare today, I challenge you to do so on a commitment to execution, not on the holding close of ideas you believe to be secret.
In one of our community’s commitments to collaboration, our members share their stories. They commit to a core value I see at the heart of the experience era that we must “Share wildly and steal willingly.”[3] And in a visit to one our member organizations, UCLA Health, in sharing their story with the community, their then CEO, Dr. David Feinberg, shared with me a critical element of their commitment and transformation was the team’s focus on kindness. In fact, they took the bold step to reset the vision for the system. Their new commitment: Healing humankind one patient at a time, by improving health, alleviating suffering, and delivering acts of kindness.[4] The power in this statement is that kindness is not about the idea of being “nice.” Rather it is an intentional action that people have with patients, care partners, and one another. It acknowledges that the experience people have in healthcare is not simply a clinical one, but first and foremost a human one that hopefully improves health, addresses human needs, and delivers kindness.
So why does kindness matter, especially in the healthcare environment? I believe it is found in the core idea I share again and again from the very early days at the Institute; that, first and foremost, healthcare is about human beings caring for human beings.
First and foremost, healthcare is about human beings caring for human beings.
In asserting that the humanity of healthcare is what guides us to the best in outcomes, we are driven by the idea that whether we are on the receiving or providing side of care, our humanity – our lived experiences, our commitment to collaboration, and yes, our kindness – matters. When we meet people “where they are” in healthcare we are honoring and doing the work at its highest level.
So, what does this mean for how we can truly transform healthcare and what are the implications for how we lead in moving forward?
- Lived experience matters. If we are to ensure the best in outcomes, we must invite those whom we care for to bring their lived experiences to bear as part of their care team. When we honor expertise as more than clinical knowledge, but also knowledge that people bring from their own personal journeys, we can and will see better results for all in healthcare. What I have learned on my own leadership journey is that when we actively seek and purposefully engage with the knowledge others bring, we express the highest levels of respect, we elevate engagement, we get smarter ourselves, and we achieve better results.
- Collaboration is a non-negotiable. If you are a leader who believes you know more than your peers or your competition, to the point that you see no need to learn more or acknowledge your own gaps, you have a blind spot that will forever overshadow your potential for success. If in that same light you believe you hold the secret to success that will distinguish you on a path to success and are unwilling to share it, your fate will most likely be the same. What I have learned on my own leadership journey is that collaboration is not just a nice concept; it is a fundamental value to all we can achieve and must commit to in healthcare. When we are willing to be vulnerable and open, to learn from others, and share our successes, not for praise, but in the interest of others achieving similar success, we are truly leading with purpose.
- Kindness counts. This word is not an empty promise. It is an action that is found at the heart of all that healthcare seeks to achieve in its core commitment to human beings caring for human beings. What I have learned on my own leadership journey is that when we honor the human being in front of us in every moment, we build bridges, relationships, stronger capacity to communicate, better listening, we express compassion and show dignity and respect.
When we look to the center point connecting these three ideas – lived experience, collaboration and kindness – we find a truly transformational space for healthcare. These concepts are not complex, but they do require intention, commitment, and a willingness to act. Here lies the biggest opportunity for us all as we seek to transform healthcare.
In my recent book, Transforming the Future of Healthcare: Reflections on a Decade of the Experience Movement, I offered a few closing actions as we work to transform healthcare for all it serves and for all who serve.[5] One action calls on us to sustain sharing and collaboration, where I offered, “In sharing, we inform others, we open conversation, and we push that conversation forward. In sharing, we inspire others and create the space for others to do the same.” That is the responsibility of all of us if we are truly committed to making healthcare better. It is why I believe that transforming healthcare starts with kindness and collaboration. It is grounded in understanding, honoring and acting on the lived experience. And it is something we all can and must commit to every day.
References
- What is Lived Experience? Available from: https://aspe.hhs.gov/sites/default/files/documents/5840f2f3645ae485c268a2784e1132c5/What-Is-Lived-Experience.pdf
- Declaration for Human Experience (in healthcare). transformhx.org. Available from: https://transformhx.org/
- Wolf JA. The experience era is upon us. Patient Experience Journal. 2016; 3(2):1-4. doi: 10.35680/2372-0247.1191. https://pxjournal.org/journal/vol3/iss2/1/
- Healing Humankind One Patient at a Time. The Beryl Institute. Available from: https://theberylinstitute.org/product/healing-humankind-one-patient-at-a-time/
- Wolf J. Transforming the Future of Healthcare: Reflections on a Decade of the Experience Movement. Nashville, TN: The Beryl Institute; 2024. Available from: https://a.co/d/2ZATRkP
