As I write this I’m flying back home from the Young Survival Coalition Summit, a weekend spent with about 400 young breast cancer survivors and co-survivors who were both celebrating their lives today, and learning about the path forward. We remembered those we had lost since the last time we were together, but largely focused on what lies ahead, and how to maximize the new normal… a new normal that was unique to each person in attendance, but with so many issues in common.
While much of the weekend focused on the needs of these patients and survivors, I am taking home two messages about healthcare delivery and meeting the needs of patients and caregivers.
Takeaway #1: Design care to meet the needs of the patient, not the provider
One of the greatest unmet needs that surfaced at the Summit was the need to meet patients where they are, not where providers are, because there are physical and cultural barriers to that gap. I spent many years working at an oncology practice that built comprehensive cancer centers that made sense for us—consolidating services to minimize operating costs and enable supervision of services for reimbursement purposes, while closing smaller practice sites.
Attendees spoke of the distance and time involved in travel and the lack of available caregivers as a barrier to accessing surveillance and survivorship care. Dr. Fumiko Chino was one of the speakers who reminded us of her seminal work on surveying the cost of parking at NCI Centers and how that acts as a barrier to care. At a cancer rehabilitation workshop, a show of hands demonstrated that only a few attendees have any access to cancer-focused physical therapy in their markets. We tend to focus on our programs and our facilities, believing that if patients need something they will find a way to get to us. It’s not that simple. We need to figure out how to get our care to our patients. I suspect that if we don’t figure it out, somebody else will.
Takeaway #2: Shared decision-making needs to become the rule, not the exception
Another presentation focused on the value of shared decision-making and shared decision-making tools. This followed a presentation talking about clinical trial results and data showing both absolute and relative improvements in PFS (progression-free survival) and OS (overall survival). While there were improvements, some were single-digit improvements that manifested only after many years of continuous therapy. Patent and caregiver survey data show that survival is only one metric that matters, and it may not be the most important one. It’s not unlikely that their goals of care may be different than those of their clinical team. What is certainly true is that without a shared decision-making discussion, these differences cannot be explored and the patient experience cannot be maximized or at least focused on what is valued by the most by the person – the patient.
As we develop cancer programs and focus on efficient scheduling and improving practitioner productivity, we need to make sure we not only leave time for shared decision-making but make it imperative. Several cancer care programs have quality improvement initiatives focused on documenting goals of care in their electronic health record. Given the complexities of how we deliver healthcare and the many factors that patients and providers must consider during the cancer journey, I suspect that shared decision making and defining goals of care is a must have, not just a nice to have.
