– by Betsy C. Risendal, PhD
The LIVESTRONG Survivorship Center of Excellence Network was established in 2005 to advance survivorship care and improve the health and quality of life of post-treatment cancer survivors. The Network is a group of seven comprehensive cancer centers as designated by the National Cancer Institute, offering information, care and services to cancer survivors, their family members and health care providers. Directors at each center will be featured monthly in this series to raise awareness of survivorship and resources at Network sites, the LIVESTRONG Foundation and other venues.
Like most people who are passionate about what they do, I am passionate about being a cancer researcher because it’s personal. My best friend was diagnosed with breast cancer at the age of 29 when I was in graduate school. She knew I was studying cancer epidemiology and had many questions for me, but I didn’t have the answers. She wanted to know how to stay healthy after a diagnosis, what to communicate with her friends and family about her diagnosis and treatment and how to best work with her growing number of health care providers. And, as a young survivor, she had unique concerns about the impact of a cancer diagnosis on her fertility and ongoing screening. I’m happy to say that she is doing well over twenty years later, and that today, research has pointed us toward answers for many of these questions. However, I often think about how little information was given to her at the time she completed treatment, and how she is still trying to fill in the blanks about her health care needs as she approaches a new stage in life.
One of my most active areas of research involves how to help cancer survivors, like my friend, to be better equipped to meet these challenges and have confidence in their ability to get the care they need. Research, and common sense, tells us there is no “one-size-fits-all” model of survivorship care. Evaluations of health care delivery in other conditions such as diabetes have shown that better outcomes are achieved if people are given access to information and actively participate with their providers in making decisions about their health and well-being. It is therefore no surprise that research is growing to suggest that best practices in cancer survivorship care should also include support for these activities. There are many models of care delivery across the LIVESTRONG Survivorship Centers of Excellence Network, but all models include giving tailored information and resources to help survivors to be better prepared to navigate their unique needs.
More and more people are turning to the Internet as a vital source of health information, and for a growing segment, this has become the most common and trusted source of information in lieu of regular interactions with a health care provider. Just recently, my friend was trying to gather information about ways to reduce her risk of recurrence, and I was glad that she called me after hearing about the things she was reading. We’ve all had the experience of putting a search term in an Internet browser and getting back hundreds of websites, which can be overwhelming when it’s about something like a house repair, but even more difficult when it’s something to do with your health. There are terrific tools available, such as MedlinePlus, produced by the National Library of Medicine, or Healthfinder ® from the U.S. Department of Health and Human Services, to help you get started. Also, the Health on the Internet Foundation Code of Conduct (HONcode) gives helpful guidance for how to evaluate a medical or health website. HON is a voluntary certification and participation is rather small, so not all credible websites have this credential. Their guidelines for certification serve as a good tool for how to evaluate content and sources, which is an important part of being an educated survivor. Looking at the currency of a website (when was it last updated?) and transparency (look at the “About us” or “Who we are” tabs) are important clues as to the trustworthiness of the information.
Another important source of information for survivors comes from other survivors. The LIVESTRONG Foundation, for example, facilitates peer-to-peer connections. Providers, local agencies and support groups often have resources— asking about them is the first step. In my own research, I am particularly hopeful about the potential benefits of group interaction in survivorship. The surprising thing is that not only can social interaction help us to feel better, it promotes a different kind of learning and positive changes in health-related behaviors too.
Getting information and resources is only part of the solution for survivors like my friend. She needs to be able to tell her own story to family members as well as members of her health care team, and to use the information to actively participate in decisions about her health care. Should she use hormone replacement therapy? Should see eat soy? Armed with information and support, she can work with her providers to get the best information for her health. And for me, that’s personal.
Help the LIVESTRONG Foundation continue to fund the UC Denver Survivorship Program by participating in a Team LIVESTRONG event. Join Team LIVESTRONG on May 24 in Durango, CO, for the Iron Horse Bicycle Classic and “race” the famous steam locomotive between Durango & Silverton. Every mile you run helps in the fight against cancer. Click here to learn more about the event or contact firstname.lastname@example.org.