Editor's Note: This is an entry in our Scholarship Contest for Patients and Caregivers to attend the Mayo Clinic Social Media Summit Oct. 17-21 in Rochester, Minn. See this post
for more details on the contest, and please cast your votes by liking or commenting on the candidates you think would be best.
Here is Deborah Boyce’s Essay:
Everyone knows of someone whose life’s been changed by a cancer diagnosis. It’s estimated one in three people will contract cancer in their lifetime.
Over the years, I’ve helped many family members and friends battle a variety of cancers. With each journey, I’d think about their choices and the choices I would make if I were in their situation.
Then, my world turned upside down. Everything I thought I would or would not do vaporized into a tsunami of uncertainty as I began frantically researching options, trying to figure out what I was going to do. I was desperate for reliable information and support and wasn’t sure where to turn.
Only one thing was certain. I wanted to enroll in a clinical trial.
If I was going to undergo extensive treatments, I wanted to make sure my experiences counted. I wanted the medical community to be one person closer to finding the best means of beating this insidious disease to help future cancer patients.
I also wanted to get the best medical treatment available.
The dramatic advancements in cancer treatments are a direct result of individuals choosing to participate in clinical trials. People diagnosed with cancer today are getting more targeted and more effective treatment therapies, living longer, and enjoying a higher quality of life thanks to the cancer patients who enroll in clinical trials each year.
After interviewing several oncologists, I found one who could enroll me in clinical trials through the Toledo Community Oncology Program (TCOP). The treatments I received were the same as those I could have received had I traveled to a major cancer clinic, but I didn’t have to leave home!
I’m participating in my 5th clinical trial now, and because of my experiences, I’ve become a passionate advocate and supporter of cancer research, patient support and access to information.
For seven years I’ve served on TCOP’s Institutional Review Board as a community member, reviewing clinical trial protocols and consent forms to ensure participants are clearly informed and understand all of the treatment options available to them. I’ve chaired TCOP’s patient advocacy committee and made numerous presentations to share my experiences and dispel popular myths about clinical trials.
People mistakenly believe clinical trials are a choice of “last resort.” Or, think their medical care would be compromised and that they would be “treated like a guinea pig.”
Nothing could be further from the truth.
The clinical trials TCOP offers provide the best “standard of care” treatments available. Each participant is closely monitored to ensure the best medical care possible is delivered. And, if participants are receiving the investigational treatment, and it’s proven to be effective, those participants are among the first to benefit from what could be deemed the best new “standard of care” treatment!
I also work to improve the quality of life and care for those touched by cancer and the mental health issues illness can bring to the lives of those living with, or at risk of developing, disease.
While working for WBGU-PBS, I launched an ambitious outreach campaign to raise awareness of the need for clinical trial research and cancer education, prevention and early detection. As project manager, I worked to create and build local and national partnerships, develop and distribute public affairs television programs, print and video materials, media campaigns, special events and a support website with inspirational video testimonials by cancer survivors.
This “Building A Living Legacy of Hope” cancer awareness campaign earned a 2009 Community Impact Award For Engagement from The Corporation for Public Television.
Being able to participate in Mayo’s incredible professional development opportunity would allow me to share my experiences and insights as both a patient and caregiver, and as a patient advocate and health educator.
While I’ve had Facebook and Twitter accounts since 2009, I’d been mostly a lurker until I joined the ranks of the unemployed in January. Social media is now my lifeline.
The week’s activities would enable me to build my healthcare knowledge base, network, and learn how to strategically integrate a variety of social media to continue building this “Living Legacy of Hope” for patients and caregivers.
This scholarship opportunity could turn my beloved avocation into a much-needed new vocation!