How does PeopleBeatingCancer.org lead to better, longer lives for cancer survivors and caregivers?
The Galen Foundation dba "PeopleBeatingCancer" is a 501C3 operating foundation funding and running one program.
PeopleBeatingCancer conducts epidemiological cancer research, curates this cancer content and then posts articles, studies, resources, videos, etc for cancer survivors and caregivers to read, share and discuss in order to make better decisions about their own health in order to live better, longer lives.
http://en.wikipedia.org/wiki/Epidemiology_of_cancer
PeopleBeatingCancer fosters cancer conversations and connections through social media for better, longer lives. Academically speaking, PeopleBeatingCancer is an "interactive health communication application." The Cochrane Collaboration defines an IHCA as "computer-based, usually web-based, information package for patients that combine health information with at least one of social support, decision support, or behaviour change support."
When I was first diagnosed with multiple myeloma in February of 1994, I went to the hospital, listened carefully to my oncologist and did everything that he told me to do. I underwent surgery, local radiation, induction therapy, more chemotherapy, had a autologus bone-marrow transplant and then had more local radiation.
My cancer returned twice over 21 months at which time the fourth oncologist in four years told me that "nothing more could be done for me." I turned to the Internet to learn about the therapies and lifestyle changes that led to my complete remission.
I have been cancer free since April of 1999.
Because the Internet and what I learned from it proved to be so valuable to me, I decided to start a non-profit organization or 501C3, The Galen Foundation, and launch an Interactive Health Communication Application to provide information, education, awareness and social support to cancer survivors/caregivers. I wanted to give survivors and caregivers all of the tools and resources that lead me to live a better, longer life. I provide these tools without bias in as integrative and complementary setting as possible.
The mission of PeopleBeatingCancer is to help cancer survivors and caregivers manage their health and live better, longer lives.
The Cochrane Collaboration's discussion of interactive health communication sums up the goal of PeopleBeatingCancer.
"People with chronic disease have multiple needs, including information about their illness and the various treatment options; social support; support with making decisions; and help with achieving behaviour change, for example, changes in diet or exercise. "
The above post, written on Thursday April 29th, 2010 describes the mission of the Galen Foundation- what PeopleBeatingCancer is supposed to do. The content below is a description of how PeopleBeatingCancer.org fulfills its mission.
In order to describe how PeopleBeatingCancer fulfills it's mission we need to state two assumptions-
1) Cancer survivors/caregivers have needs that are not met by their conventional oncologist. Conventional oncology focuses on cancer diagnosis and treatment. As any cancer survivor/caregiver will tell you, there is a whole lot more to living with cancer.
2) Computer-based information, education and support help satisfy the needs of cancer survivors/caregivers. While I can't speak for all survivors/caregivers, I can say that computer-based information, education and support is the reason why I am alive today.
Assumption #2 is a far-reaching statement that requires explanation.
What sort of online content does PeopleBeatingCancer contain and how does the site find it?
PeopleBeatingCancer researches articles, studies and reports about the world of cancer- everything from conventional issues like diagnosis, therapies and side effects to non-conventional issues like lifestyle, supplementation, exercise and nutrition.
PBC then reports on this information through long term cancer survivors. When cancer survivors curates and translates cancer content- credible studies, articles and reports, readers can then understand, question, comment and make better health decisions.
Curation and collection of articles, studies, videos and resources daily on dozens of cancer issues is the first step of how PeopleBeatingCancer.org researches content. Cancer survivors/caregivers then translate an article, study or report in order for the reader to better understand the material. It is this sort of enhanced understanding that cancer survivors/caregivers can find on PeopleBeatingCancer.org that may lead to better decisions and lifestyle changes. It is exchanging information in the forums that may provide the necessary social support.
What does "curation" mean?
Media Curation is a complex subject among media professionals, with notable professionals both for and against the practice. Mark Cuban, a well known owner of media properties and sports teams has said that media Aggregators are "vampires" and content creators that don't ban these so-called vampires are "showing their neck" and likely to have their lifeblood sucked dry. Cuban is not alone in this position, many media companies including Rupert Murdoch's NewsCorp have taken a stance against content aggregation and curation.
But just as passionate are an emerging class of new publications and editors like Arianna Huffington of The Huffington Post and Michael Arrington of Tech Crunch. Arrington says Agregators are supporting readers, and business models have to evolve. New companies and services have developed like Pearltrees[1].
PeopleBeatingCancer.org relies on cancer survivors to report on, translate and simplify cancer content that we find on the internet.
Therefore, the mission of PeopleBeatingCancer.org is to provide information, education and support to cancer survivors and caregivers. It is the quality of this information, education and support that will satisfy the needs of cancer survivors and caregivers helping them to lead better, longer lives.
David Emerson-March 14, 2011
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