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A Step Toward Increasing Patients’ Voices in Clinical Trials

Wednesday, July 8, 2020

The Cancer Support Community welcomes the FDA’s new pilot program, Patient Project Voice, as a thoughtful first step toward the development of a comprehensive and consistent method of sharing patient experience data (PED) collected in clinical trials with patients and providers to help inform treatment decisions. For years, the CSC has been in conversations with the FDA on the importance of collecting PED and specifically, in incentivizing manufacturers to examine PED through a pilot program. We are very encouraged to see the agency pursue this opportunity and are eager to work with interested stakeholders to make the project a success.

The New Year Brings Important Policy Changes That Benefit Patients

Monday, January 13, 2020

As we start a new year, the Cancer Support Community (CSC) is pleased to report on two exciting policy changes that promote the delivery of psychosocial care for cancer patients.

Cancer-Related Distress and Unmet Needs Among Acute Myeloid Leukemia (AML) Survivors

Monday, December 16, 2019

The Cancer Support Community shares important information about the relationship between psychosocial distress and unmet needs, as well as some suggestions about how best to provide AML patients and survivors with supportive care.

Let’s Talk About Chronic Myeloid Leukemia

Friday, November 17, 2017

Recognizing the the unique needs of Chronic Myeloid Leukemia patients, the Cancer Support Community (CSC) education team utilized CML specific information from CSC’s Cancer Experience Registry to create the CML Discussion Tool.

Empowered by Knowledge: Five Ways to Manage Stress

Wednesday, September 27, 2017

Stress is an inevitable part of life, especially after a cancer diagnosis. Excessive amounts of stress can harm both your physical and psychological health, and in a time when your body is already vulnerable, it’s vital to learn how to manage those feelings.

Stage 3 Ovarian Cancer Survivor Helps Cancer Patients Cope with Lifeline

Monday, September 18, 2017

Marcia Donziger, a 20-year cancer survivor, talks about how her own and her friends' cancer journeys led to the creation of MyLifeLine.org. MyLifeLine offers patients a way to connect with their loved ones through a free, private personal webpage to keep family and friends informed about how they are doing.

FDA Reauthorization Bill a Win for Psychosocial Care

Tuesday, August 29, 2017

On August 17, 2017, the Food and Drug Administration Reauthorization Act of 2017 (FDARA) became law. FDARA is primarily responsible for funding the Food and Drug Administration (FDA) so that the agency can review and approve drugs and devices in a timely manner. It also contains provisions that provide guidance for manufacturers on how they conduct research on the drugs and devices they are developing.

Five Reasons to Join the Cancer Experience Registry

Wednesday, August 9, 2017

The Cancer Support Community's Research and Training Institute provides a unique and explorative opportunity for people to share their personal experiences with cancer through The Cancer Experience Registry. The Registry 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 Registry, all cancer patients—at any point of their cancer journey—and caregivers can contribute to the cancer community.

How Can You Be a Cancer Patient Advocate?

Wednesday, July 26, 2017

Health care policy is often disconnected from patients, especially cancer patients. Medicare and Medicaid policy can impact a family’s ability to afford chemotherapy and have an impact not only on the cancer patient but on the entire family. If the price of cancer medications is so high that people can’t afford to put food on the table, then health care policy is not working for patients.

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