Caring for someone with cancer? Surprise, you're a caregiver

BY GUEST BLOGGER | AUGUST 21, 2009

Lindsay Ray, a graduate student at the University of Missouri School of Journalism, is an editorial summer intern for CURE.

This summer my cousin was diagnosed with testicular cancer. As this is my first experience with someone close to me being diagnosed with cancer, my mind was immediately filled with questions.

What does this mean? How should I feel about this? How can I help? It was the helping question that proved to be the most trouble. Because my cousin lives a few hours away and being a poor college student, I couldn't drive to visit him often as I would have wanted. Instead, I decided to help out by doing some of the things I do best--research and baking. I volunteered to be the family medical researcher and baked a huge batch of brownies I mailed to him overnight.

Does this mean I consider myself a caregiver? Not necessarily--but maybe I should. While working on the article "I'm Not a Caregiver, Am I?" I got the chance to interview people on how most caregivers don't see themselves as caregivers. What I discovered in working on that article is that most caregivers never label themselves as such. They're so focused on the action of taking care of someone that they never sit back and think about the role they've been thrown into. Sometimes it takes someone else (most likely the patient) to help the caregiver think about their new role.

The main revelation I took away from working on the article is anybody can be a caregiver. The role of caregiver is hard to define for people because it encompasses so many different activities--from occasionally offering assistance from afar to helping someone daily. I still find it hard to consider myself a caregiver. I mainly consider my part as doing whatever I can (no matter how small it might be) to help out. If that makes me a caregiver, then I guess I am one.

What I do know is that caregiving is something that touches everyone's lives whether they recognize the caregiving role formally or not.

I think Rosalynn Carter put it best when she said, "There are only four kinds of people in the world--those who have been caregivers, those who are currently caregivers, those who will be caregivers, and those who will need caregivers."

New cancer site combines social networking, research, and medical record keeping

BY GUEST BLOGGER | JULY 24, 2009

Anna Sobering, a senior journalism student at the University of Kansas, is an editorial summer intern for CURE.

Patients and caregivers have a lot on their plates when dealing with a cancer diagnosis and its treatment. Easy tasks such as keeping track of appointments, medications, side effects, medical records, and updating friends and family, can be daunting for patients going through the physical and emotional stresses of cancer.

The American Cancer Society recognized the cancer community should have a way to use available technology with the information the ACS provides that would satisfy the needs of those who are dealing with cancer.

Len Lichtenfeld, MD, deputy chief medical officer at the American Cancer Society says, "We begin to realize, as we live in an information age, that we will need to have tools that take advantage of the technologies that are out there."

As a result, the ACS launched Circle Of Sharing, a free social, organizational, and informational online resource tool for the cancer community.

In the development of this site, the ACS understood it must meet the expectations of a public that routinely uses the advanced social networks already available to them online. Therefore, with the help of Microsoft HealthVault, a free, secure, and private health service, the ACS built the Circle Of Sharing to function as a community networking application combined with a system that stores electronic medical records and provides a personalized collection of credible research and resources from the ACS.

In looking over the site, I've come to the conclusion that this tool could make the lives of those dealing with a cancer a lot easier. Instead of spending hours online researching and sifting through the vast amount of cancer information on the Web that could be unreliable or incorrect, Circle Of Sharing allows users to simply enter in information about their cancer and the site instantly provides them with personalized articles about their cancer diagnosis, treatment options, side effects, local resources, and support groups.

Lichtenfeld says the convenience of this tool makes it an extraordinary online resource for cancer patients and caregivers. "Being able to put all medical information in one place and putting the patient in control, really puts this Circle Of Sharing on a higher level than most of the other services that are available to the cancer community," he says.

Similar to an online social network, users can invite friends and family to become part of their 'Circle' to keep in contact with them or share updates regarding the status of their health. Similar to a Facebook page, users have profiles that they can customize and update. They can also choose to share any of the personalized information that is provided to them by the ACS with members of their Circle. To file their records in Circle Of Sharing, users will also need to create a Microsoft HealthVault account. Electronic medical records entered into Circle Of Sharing are stored in Microsoft HealthVault. Personal information entered in Circle Of Sharing is protected by the security and privacy enhancements put in place by Microsoft.

According to Lichtenfeld, users should not fear the security of their medical records on Circle of Sharing. "Microsoft has gone to great lengths to make sure privacy and electronic medical records are protected," he says.

Does Circle Of Sharing meet all the needs of the online cancer community?--Lichtenfeld says it's a step in the right direction.