For the past year, the term “patient-centered care” has become increasingly prominent in the conversation of innovation in health. The push for improved patient-physician relationships in health care has prompted health-centered organizations, like the Cancer Support Community (CSC) to think differently: to think about the patient through the perspective of their own experience.
Through the words and reviews from my mother, my sister, and my aunt, CSC successfully does just that. The nonprofit and its Research and Training Institute provides a unique and explorative opportunity for people to share their personal experiences with cancer through theThe Cancer Experience Registry (CER).
The Registry collects stories and creates a repository of patient experiences to incorporate the patient voice into educational materials and resources for people impacted by cancer. It helps connect people touched by cancer and use information from participants to learn more about what quality of life means to patients. By being a part of the Registry, all cancer patients—at any point of their cancer journey—and caregivers can contribute to the cancer community.
Here are five reasons why joining the Registry might be beneficial to cancer patients and caregivers:
The ability to share how a personal life-changing experience affected you is a powerful tool to alter the way many people think and know about cancer. With the Registry, your story is you, and there is a whole world of people ready to hear you, learn from your experience, and create their own opportunity to share their perspective. Simply, the Registry is an engagement circle with no end on being able to share to learn from others.
These days, many blog-related platforms limit the ability for patients to register by requesting money or private information; however, the Registry creates an efficient 3-step registration process where all you would need to start with is an e-mail, selecting your primary diagnosis or caregiver status, and taking an efficient and personable survey.
One of the most successful attributes to the Registry is the unique survey containing a series of questions formulated by medical professionals; physicians; social workers; behavioral researchers; nurses; health economists; caregivers; and most importantly, patients. These questions allow anyone registered with the Registry to understand the complete picture of the cancer experience with regards to how it affects you, your work life, your family, treatment decisions, and what it is you want or wish to know from this experience. With the survey’s creative series of questions, CSC and the Registry are able to raise awareness about the needs of people living with cancer providing a complete picture of the patient and caregiver experience.
The Registry provides critical insight for anyone affected by cancer. It provides substantive information beyond you as the patient or caregiver and into the streamline effect that cancer plays into the lives of your family and friends. One survivor, LaKeesha Murray, who was diagnosed with triple-negative breast cancer in 2012. It was after her relapse in 2016, when she discovered CSC in Philadelphia and learned more about the Registry and what it had to offer explaining how “encouraging [it is] to come and talk to other parents about how cancer has affected the children and talk about our own journey and how it has affected us as parents.”
The beauty of the Registry is that unlike cancer-specific and selective registries anyone with any type of cancer can join. From prostate cancer, chronic myeloid leukemia, multiple myeloma, breast cancer, colon cancer, etc., the Registry is for you if you have been affected. An addition, the Registry is an opportunity for caregivers – spouses; partners; daughters; sons; and friends – to share their questions, stories, and experience caring for someone affected by cancer. The opportunity the Registry provides for anyone touched by cancer allows for a complete image of the patient experience AND the caregiver experience.
For more information, check out the Registry site.