Five Reasons to Join the Cancer Experience Registry

By Yasmine Yaiche

For the past year, the term “patient-centered care” has become increasingly prominent on the road to innovation in health. The motive for improved patient-to-physician relationships in healthcare 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 non-profit and its Research and Training Institute provides a unique and explorative opportunity for people to share their personal experiences with cancer through the Cancer Experience Registry (CER).

The CER collects stories and creates a collection of patient voices to exchange information and resources. It helps connect people touched by cancer, and it uses information from participants to learn more about what quality of life means to patients. By being a part of the CER, 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:

  1. Sharing YOUR story

The ability to share how a personal life-changing experience affected you is a powerful tool to alter the way many people think or know about cancer. With the CER, 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. Essentially, the CER is an engagement circle with no end on being able to share to learn from others.

2. Registration is SIMPLE

These days, many blog-related platforms limit the ability for patients to register by requesting money or private information; however, the CER 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.

3. Survey questions more UNIQUE than most

One of the most successful attributes to the CER 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 CER 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 CER are able to raise awareness about the needs of people living with cancer providing a complete picture of the patient and caregiver experience.

4. Cultivates a support system for YOU and YOUR FAMILY and FRIENDS

The CER 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 woman, LaKeesha Murray, was diagnosed with triple-negative breast cancer in 2012. It was after her relapse in 2016, where 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.”

5. ANYONE can join who has been affected

The beauty of the registry is that unlike selective groups 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 to the registry is the 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.

The Cancer Support Community (CSC), including its Gilda’s Club affiliates, is the largest professionally led nonprofit network of cancer support worldwide.

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