Power to the Patient Voice

July 30, 2020
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You hear the words, “You have cancer,” and suddenly, the world around you stops. You can see the doctor’s lips moving to form words that explain what your new world, a world with cancer, is going to look like, but all you can think about is how this diagnosis will uproot your entire life. “What will my day to day look like? Who will get the kids ready for school if I’m in treatment? How will I afford treatment?” You have a million questions racing through your head, but you can’t seem to find your own voice to form a simple sentence.

Your voice is one of the most powerful tools at your disposal to positively impact your cancer experience.  You can use your voice by signing up for Cancer Support Community’s (CSC) Cancer Experience Registry®.  The Registry is an online survey for any patient or survivor with a cancer diagnosis, as well as for those who have cared for someone with cancer. The survey covers topics ranging from emotional well-being and financial issues to diagnosis and treatment. It provides an opportunity to share one’s unique cancer experiences and to create a meaningful impact for others who are experiencing similar journeys. The Registry also provides a way to show researchers and health care teams where there may be gaps or unmet needs in cancer care.  No two cancer experiences are the same, but the collective responses can give power to the patient and caregiver community. 

Marcia, a CSC employee and ovarian cancer survivor, shares: "As an ovarian cancer survivor, research is important to me. Participating in CSC’s Cancer Experience Registry was my way to give back by sharing my personal experiences which will benefit others going through cancer in the future.”

The survey provides CSC with blinded data that is used to develop or improve CSC services and programming that benefit the greater cancer patient and caregiver communities.  Responses are also used by doctors and nurses, researchers, advocates, and policy makers to provide better care.

Ellen, a Board Member for CSC’s Research and Training Institute (RTI), expresses that “the Cancer Experience Registry is a vital source for ensuring the voice of people with cancer is driving clinical development, compassionate care, health policy change and educational needs.”

Here are some examples of what we recently learned about Cancer Experience Registry participants’ cancer experiences:

•    1 out of 3 were not satisfied with how much they participated in making their treatment decisions
•    Only 1 out of 2 felt prepared to discuss treatment options with their doctor
•    1 out of 3 held back from telling their health care team about side effects and symptoms
•    4 out of 10 did not recall receiving information about long-term side effects of treatment
•    4 out of 10 felt inadequately prepared to manage side effects of treatment

Findings such as these have led to the development of support services, educational programming, advocacy efforts, and further research – all on behalf of patients and caregivers.  More learnings from the Cancer Experience Registry can be found in the 2020 Cancer Experience Registry Report.

Still not convinced of the power of your voice? Jeff, a chronic lymphocytic leukemia patient and CSC Advisory Board member says, "Your voice can be heard and you can still remain private! Participating in the Cancer Experience Registry provides valuable insights to a wide range of researchers and providers. These insights transform into better cancer journeys and outcomes for you and those who share your path.  Please consider participating today!"