Social Media Summit Scholarship Essay – Deborah S. Boyce

Posted by Groenke @joycegroenke, Aug 15, 2011

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
http://socialmedia.mayoclinic.org/2011/07/26/patient-caregiver-scholarship-contest-for-social-media-summit/
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.

Why?

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!

Interested in more discussions like this? Go to the Cancer group.

Good luck, Deb! You’ve got my vote!

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Well said – best wishes on your vocation Deb.

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Deb,
You’re an inspiration! You deserve this.

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What you have said about the value of clinical trials — to participants as well as to the success of cancer research — is so important! Thanks for the work you’ve already done in distributing this crucial information. This scholarship would be a terrific way to build on this foundation and accomplish even more!

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@mardiac

Good luck, Deb! You’ve got my vote!

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Thanks for your vote, @mardiac! When I was diagnosed with cancer, there was no Twitter or Facebook! I experienced the isolation of being both a caregiver and a patient. I relied on Dr. Bernie Seigel’s online ECAP community (exceptional cancer patients) for support. This online community was a Godsend for me at the time.

Today there are so many more venues through social media to get needed support. In the isolation of my unemployment, it’s become a much needed lifeline!
I can keep up with what’s happening in the world, and with family and friends, and converse about it with others. I always learn something new, find daily doses of inspiration and much-needed chuckles. On really good days there are moments that bring both belly laughs and amazing epiphanies!

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@wanda

Best of luck Deb! Great essay!

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Thanks so much @wanda! What resonated with you the most?

I am so hoping I get the opportunity to attend the jam-packed week at Mayo Clinic in October! Kudos to those who made the funding available for the scholarships so financially strapped patient/caregivers have the opportunity to attend and add their voice and experience to the conversations!

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@donnam

Well said – best wishes on your vocation Deb.

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Thank you @Donna M! I am passionate about helping healthcare consumers and cancer survivors (all whose lives are touched by cancer) navigate this new media frontier!

Being totally immersed in social media (Facebook, Linkedin, Twitter) for the past 8 months has connected me with so many new friends and reinvigorated my quest to turn what had been an avocation into a new vocation. And my Klout score continues to grow as a healthcare communicator 🙂

There are so many more communication channels to reach people through now as social media applications continue to grow and expand! I am excited about the targeted possibilities of Google+ with friend circles and real-time video chats. I want to learn more about blogging, editing and posting videos myself, and how to measure the effectiveness of these social media investments.

I’m hoping my journeys through the healthcare system and my new media/pr/marketing and communications experiences can be put to good use!

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@drdrake

Deb,
You’re an inspiration! You deserve this.

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Dr. Drake, I appreciate your kind words of support! People with chronic conditions, as cancer is considered today, face so many challenges in trying to stay positive and in working to recapture a sense of healthiness that died with their cancer diagnosis.

I hope I can inspire people to become more empowered healthcare consumers by learning how to navigate the proliferation of health information available online and find much needed support throughout their journey. Social media can offer both, but people need to feel open to learning how to use these tools and become comfortable with new ways of forging and building relationships.

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@teriharrison

What you have said about the value of clinical trials — to participants as well as to the success of cancer research — is so important! Thanks for the work you’ve already done in distributing this crucial information. This scholarship would be a terrific way to build on this foundation and accomplish even more!

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Thanks for reinforcing the continuing need to get this important information out, @teri Harrison!

A couple of years ago, The New York Times reported the greatest barrier to discovering cures for cancer is the lack of clinical trial volunteers. Although the figure fluctuates, it’s been estimated at best, only 3 percent of adult cancer patients enroll in clinical trials. The result? Many clinical trials never accrue enough participants to offer meaningful results and the war on cancer continues.

And thanks for your vote of support! Being able to attend the week’s activities organized by Mayo Clinic’s Center for Social Media would take my new media activities to the next level and be invaluable!

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Deb,
I wish you all the best and hope you are able to attend the summit — you have my vote! Thank you for sharing your story — I found it enlightening and inspiring, highlighting an extremely important topic that does not get enough attention.

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@ellenpatterson

Deb,
I wish you all the best and hope you are able to attend the summit — you have my vote! Thank you for sharing your story — I found it enlightening and inspiring, highlighting an extremely important topic that does not get enough attention.

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Thank you for your vote of support and kind words, Ellen! Clinical trial research is needed to develop more effective treatments and effective prevention modalities, and someday cures!

We are bombarded with so many communication vehicles these days, it can be overwhelming for someone facing serious testing procedures and diagnoses. It’s difficult to listen to and read all of the information and opinions shared, let alone process the reliability of those messages!

But information alone is not enough. Empowerment comes from all members of the healthcare team – patients, caregivers, doctors, nurses, family members – working together. Without that 360 degree commitment and teamwork, it is easy for patients to fall through the cracks!

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