One of my survivors described it so eloquently: “when I was in cancer treatment, it felt like a maze, but someone was always holding my hand, leading me through. When I was done, it’s as if they opened a door to a wide open field. There was no one out there, and I had no idea which way to go.”
It’s all too true that cancer survivor care is hit-and-miss at best. I have yet to hear a survivor say that after treatment, she was offered a comprehensive survivorship care plan to help return her to physical and emotional wellness.
A first step towards creating such a plan would be to document what survivors need. Unmet survivor needs is a hot topic of current research. But it could be many years before this research makes its way from the ivory towers into care models that make a difference for survivors. In the meantime, there’s an opportunity for you to make a difference.
One of the aims of the Cancer Support Community (CSC) is to promote a “transformative model of healthcare that puts the patient experience at its center”. The CSC’s research arm recently published “Elevating the Patient Voice”, a reporting of data collected directly from cancer survivors about their experience and their needs. What’s remarkable is that this project isn’t taking place in a rarified academic setting; it’s an open registry that any survivor can participate in online. This is a remarkable opportunity for any survivor to make his or her experience known to a team ready to put that data directly in the public eye.
Cancer survivors are a large and fast-growing group: over 14 million in the US alone. As of September 2014, 7,000+ survivors had added their voices to the Cancer Experience Registry. If even 1% of survivors spoke up through the registry, that number would far exceed the power of any research study. Imagine the impact the sum of those voices could have to transform survivor care.
Your experience could make a difference to other survivors. Will you speak out?