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JourneyForward.org

The website www.journeyforward.org was designed to help oncologists, primary care physicians and their patients improve their survivorship care. 

BY ELIZABETH WHITTINGTON
PUBLISHED WEDNESDAY, MARCH 16, 2011
Talk about this article with other patients, caregivers, and advocates in the General Discussions CURE discussion group.
The website www.journeyforward.org was designed to help oncologists, primary care physicians and their patients improve their survivorship care.

The website www.journeyforward.org was designed to help oncologists, primary care physicians and their patients improve their survivorship care based on the Chemotherapy Treatment Summary and Surveillance Guidelines promoted by the American Society of Clinical Oncology. In addition to a survivorship toolkit for patients, resource directory and medical history builder, the site also offers a comprehensive web-based tool that allows medical professionals to record a patient’s medical history and needed follow-up after treatment via Survivorship Care Plan Builder 2.0.

JourneyForward.org is the collaborative effort of various organizations and companies, including the National Coalition for Cancer Survivorship, the UCLA Cancer Survivorship Center, WellPoint, Inc., and the pharmaceutical company, Genentech. Users of Plan Builder are first asked if the patient was diagnosed with breast cancer, colon cancer or other cancer. While the guide is more geared toward patients with breast or colon cancers, it can be used for any cancer. Additional cancers will be added soon, including one for lymphoma and lung cancer.

A detailed five-step questionnaire follows that includes providing general information, such as date and age of diagnosis, and contact information of his or her medical team and caregivers. The next step may contain a more detailed medical history, such as if and how many lymph nodes were removed, patient’s family medical history, stage of cancer and any known biomarkers or gene mutations. A treatment plan and summary, including type of therapy, whether it was received during a clinical trial and what toxicities occurred, is included. The final step consists of follow-up care instructions, such as screenings, referrals to genetic counseling and monitoring of late and long-term effects.

Because the information is detailed, patients are encouraged to have their doctor use the program. If your physician has not provided you with a survivorship care plan in some form, it may be helpful to fill out as much as you can in advance and take a printed version as a conversation starter for you and your doctor to begin developing one. There is also a reference guide to help you talk to your doctor about a survivorship plan.

While Survivorship Care Plan Builder is really designed for an oncology professional to complete (mostly because of the specific treatment information that should be added), it’s important for patients and survivors to advocate to their health care team about getting one, says Jennifer Hausman, clinical research manager from WellPoint who helped create Journey Forward.

“We know survivors want a survivorship care plan,” she says. “The important part of going to the Journey Forward website and seeing the Survivorship Care Plan Builder is so that patients want one and can self advocate for one. The survivorship care plan movement is driven by patient interest, so we really encourage and provide tools and strategies on our website for self-advocation for survivorship plans.” Those tools include tips for talking with your doctor about a survivorship plan and a guide that survivors can print and bring to their health care provider, such as their oncology nurse or oncologist.

An upcoming feature on the website will the survivorship library, which provides about 65 documents that outlines information on late and long-term effects, and allows users to attach certain articles to their survivorship plan.

Talk about this article with other patients, caregivers, and advocates in the General Discussions CURE discussion group.
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