With more people today living with cancer than dying from it, there’s a clear need for more avenues to help people learn how to navigate a life that has been changed forever. There is, however, no coordinated system of care in the United States and many patients are left to fend for themselves. Now a free online service wants to empower survivors by providing the ability to develop a custom survivorship care plan.
The new computer-based tool comes from Journey Forward and can be found at http://www.journeyforward.org/ It enables anyone diagnosed with any type of cancer to have their medical history, cancer treatment summary and a post-treatment survivorship care plan captured in one place. These plans improve coordination of care throughout their lives, and helps survivors and their loved ones understand their cancer treatment and follow-up needs. Survivorship care plans also put survivors in a better position to advocate for themselves, monitor their health and participate in decisions about future care.
The system works as a coordinated post-treatment plan between the survivor’s oncology team, a primary care physician and other health care professionals. The oncologist creates a summary of the survivor’s treatment and includes direction for future care. The plan builder includes care plan templates for colon, breast and other cancer types.
A typical survivorship care plan includes:
1. patient diagnosis and treatment summary
2. best schedule for follow-up tests
3. information on late and long-term effects of cancer treatment
4. list of symptoms to look for
5. list of support resources
This comprehensive medical summary, given to the survivor and their primary care physician, helps support better survivorship care. The plan includes important information for monitoring possible secondary cancers and any late- or long-term effects of the survivor’s cancer treatment. The plan also relieves a survivor from having to recall all the details of treatment and ensures all future health care providers are working as a team for the survivor’s care.
Journey Forward is a collaboration among the National Coalition for Cancer Survivorship (NCCS), the UCLA Cancer Survivorship Center, WellPoint, Inc., and Genentech. The program was created in response to recommendations by the Institute of Medicine (IOM), which has reported there is currently no system of coordinated follow-up care for cancer survivors in the United States. The report says many cancer survivors are "lost in transition" from active treatment to survivorship, with few clues about how to manage their follow-up care and the physical and mental health problems that may result from their treatment.
"There is a critical need for cancer patients to be informed and empowered about their care before, during and after cancer treatment," said Thomas P. Sellers, MPA, President and CEO of the National Coalition for Cancer Survivorship and a 10-year cancer survivor. "Journey Forward helps all parties involved by encouraging an open dialogue between doctors and patients and by providing a customized way to coordinate care."
About the author: Pat Elliott is a journalist and blogger who has written about health issues for more than 20 years. She is also a cancer survivor who coaches people on how to manage their transition and take control of their new future.