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joycegroenke

Social Media Summit Scholarship Essay – Deborah S. Boyce

Posted by @joycegroenke in Cancer, 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!

Tags: Scholarship contest, clinical trials, Cancer, cancer treatment, Patient Advocate, cancer diagnosis, standard of care, social media, social media summit, online community

snehatp, Izzy, connectedPatient and 69 others like this
mardiac

Posted by @mardiac, Aug 16, 2011

Good luck, Deb! You've got my vote!

dboyce likes this
dboyce

Posted by @dboyce, Aug 16, 2011

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!

mardiac

Posted by @mardiac, Aug 17, 2011

Deb--glad you are able to find support groups on the web. It is pretty amazing.
Was wondering if you had othe recommendations? I would like to forward them to one of my friends...

dboyce likes this
dboyce

Posted by @dboyce, Aug 17, 2011

Are you looking for recommendations for cancer support sites? Or online support groups for a specific type of cancer, illness or disease?

dboyce likes this
martyfeeney

Posted by @martyfeeney, Aug 17, 2011

Excellent heart felt essay!

dboyce likes this
fisherman

Posted by @fisherman, Aug 17, 2011

You get my vote...you are a great writer and this essay underscores that point. Having worked with you on the WGGSU-TV project I know how devoted you are to the subject and what an effective advocate for it you have become.

dboyce likes this
dboyce

Posted by @dboyce, Aug 17, 2011

Many thanks, fisherman! I have been passionate advocate about this subject for many years now. Social media gives me another, 1 to 1 platform through which I can share information and support. Thanks for registering your thumbs-up vote of support!

dboyce likes this
dboyce

Posted by @dboyce, Aug 17, 2011

Thanks for taking the time to read my essay and comment marty! Your thumbs-up of support is greatly appreciated!

dboyce likes this
mardiac

Posted by @mardiac, Aug 18, 2011

I'd like a few cancer support sites, particulalry for ovarian cancer, and maybe one related to chronically ill cancer patients, to share with a friend

dboyce likes this
wanda

Posted by @wanda, Aug 16, 2011

Best of luck Deb! Great essay!

dboyce likes this
dboyce

Posted by @dboyce, Aug 16, 2011

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!

wanda

Posted by @wanda, Aug 17, 2011

I wasn't aware of the value of the clinical trial. Before reading your essay I would have thought of clinical trials as treatment of last resort. Now I see the importance. Thanks for enlightening me!

dboyce likes this
dboyce

Posted by @dboyce, Aug 17, 2011

Thanks for taking the time to read and comment on my essay, Wanda!

I truly believe if people understand why clinical trial participation is so important for the treatment and prevention of disease, and realize they are not compromising their medical care, more individuals will step forward. Having this appreciation before a diagnosis strikes eases the decision-making process, instead of confounding it.

donnam

Posted by @donnam, Aug 16, 2011

Well said - best wishes on your vocation Deb.

dboyce likes this
dboyce

Posted by @dboyce, Aug 16, 2011

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!

drdrake

Posted by @drdrake, Aug 16, 2011

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

dboyce likes this
dboyce

Posted by @dboyce, Aug 16, 2011

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.

teriharrison

Posted by @teriharrison, Aug 16, 2011

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!

dboyce likes this
dboyce

Posted by @dboyce, Aug 16, 2011

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!

BobS likes this
ellenpatterson

Posted by @ellenpatterson, Aug 16, 2011

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.

dboyce likes this
dboyce

Posted by @dboyce, Aug 16, 2011

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!

bobs

Posted by @bobs, Aug 16, 2011

Thank you, Debra, for an eloquent and convincing essay.

dboyce likes this
dboyce

Posted by @dboyce, Aug 16, 2011

Thank you so very much for your thumbs-up show of support, BobS!

ritakirkpatrick

Posted by @ritakirkpatrick, Aug 16, 2011

Hi Deb,
Your essay was informative and upbeat.
Good luck on the scholarship.

dboyce likes this
dboyce

Posted by @dboyce, Aug 17, 2011

Many thanks for the vote of confidence, Rita! I'd love to be able to attend all of the activities hosted by the Mayo Clinic's Center for Social Media in October!

brunswickian

Posted by @brunswickian, Aug 16, 2011

Terrific essay. I admire your conviction and courage.

dboyce likes this
dboyce

Posted by @dboyce, Aug 17, 2011

Thanks for giving it a thumbs-up, Brunswickian! Just under 27 hours to go! Here's hoping the essay makes it to the top 15 finalists!

kennethchristiansen

Posted by @kennethchristiansen, Aug 17, 2011

Deb,

You have done many good things for the fight against cancer. I admire your persistence and effectiveness in communicating with the public. Social Media is something I am just beginning to understand. You will be very effective with its tools in hand. Blessings on your continued work.

Photo27 and dboyce like this
dboyce

Posted by @dboyce, Aug 17, 2011

Thank you for your kind comments and blessings, Kenneth! I am trying to do what I can to ease the confusion and pain of those living with cancer by offering resources, information and support.

For me, cancer is like parenthood. There's the world BC (before cancer/before children) that you can't quite remember. Then there's the world after, a world that is qualitatively changed forever. It's the start of a new life journey, with bumps and blessings along the way 🙂

Every day my understanding of social media grows as well. I've been a student, scholar and professional, studying, researching, teaching and using new media for over 20 years. Back when the World Wide Web was text-based, before the GUI (graphic user interface) came along in 1995. And the more I've learned, the more I realize I have yet to learn! Pursing a doctorate will do that for you!

That's the boon and boondoggle of studying social media. Each and every day I learn something new, because the new media landscape just keeps changing. There's never a dull moment. Which is why I find this field so interesting!

dubravka021

Posted by @dubravka021, Aug 17, 2011

Great work, Deb. Your dedication and engagement are truly inspiring.

My school, Triton College, has a small grant in honor of Kathryn McLaughlin whose funds are to be used for projects that increase health information literacy and education, especially related to cancer. We are particularly interested in ways social media can be used for increasing information literacy. The work you are doing is very important and can truly make a difference. So, I would like to invite you to come to our school and give a talk and presentation of your work . The fall semester begins next week, and I'll get in touch with you then.

Good luck and keep up the good work!

dboyce likes this
dboyce

Posted by @dboyce, Aug 17, 2011

I am honored to be invited Dubravka, and I would be happy to help in any way that I can! Health information literacy and education is more important today, than ever, given the advent of social media and the proliferation of information now being shared via the web.

As a communications teacher and professional, my goal is to help people navigate the new media frontier with greater ease and efficacy - learning how to use the tools available and learning how to assess the information and opinions shared.

If people are armed and equipped in advance with these skill sets, the health challenges they face will not seem as overwhelming and insurmountable. They'll find both reliable (and readable) information and support will be more readily at hand.

Members of the medical community are beginning to step up, realizing the important role they play in empowering healthcare consumers.

photo27

Posted by @photo27, Aug 17, 2011

You get my vote Debby! Excellent article. Very moving. Your desire to help has moved me to tears. I wish you all the success in the world and admire your dedication and perseverance.
If I have any talent or time to aideyou in this endeavor, please let me know.
We have a lot of catching up to do - had no idea you had been doing all of this.
Once again, you have a very well written, moving scholarship application. Where do I donate? Thank you for sharing this with me. Kelly j. Smith (smith masterson) 🙂

dboyce likes this
dboyce

Posted by @dboyce, Aug 17, 2011

Thank you for taking the time to read my essay and comment, Kelly! Your show of support and comments are greatly appreciated!

Right now, I am hoping to end up in the pool of Top 15 essays by 11:59:59 pm Central Time tonight! That is the deadline for readers to register their votes and comments. So you can help me reach that goal!

Then the judges will select 5 scholarship winners for what looks to be an amazing week of social media events and activities, Oct. 17 - 21st! I remain hopeful I will have the opportunity to attend 🙂

rainbow2bryte

Posted by @rainbow2bryte, Aug 17, 2011

Thank you for your time and efforts! 🙂

dboyce likes this
dboyce

Posted by @dboyce, Aug 17, 2011

rainbow2bryte, I LOVE your username! Thank you so much for taking the time to read and comment on my essay and register your thumbs-up vote of support!

slcgirl

Posted by @slcgirl, Aug 17, 2011

This is a great essay Deb. I sincerly hope you get the scholarship. What you have done for patient advocacy is exceptional.

dboyce likes this
dboyce

Posted by @dboyce, Aug 17, 2011

@slcgirl, thank you so much for taking the time to read my essay and give your thumbs-up show of support! Both are greatly appreciated!

slcgirl

Posted by @slcgirl, Aug 17, 2011

By the way Deb - this is Patty from the Boston Workshop. You truly are amazing!

dboyce likes this
dboyce

Posted by @dboyce, Aug 17, 2011

you are so kind 🙂 so are you, Patty! Enjoy the scenery in an around slc!

bookbinder

Posted by @bookbinder, Aug 17, 2011

Hi Deb: Great essay! I lost my 48 year-old nephew to colon cancer a year ago in May. He was in otherwise excellent health but didn't think the recurring cough and stomach ailment was serious, so ignored them, thinking they would go away on their on. Had he taken steps immediately, he might have been properly diagnosed and the high-powered and experimental treatments he subsequently received might have saved his life. And his situation prompted me to get a colonoscopy, which showed a very suspicious polyp that turned out to be one step away from malignant. I had 12" of colon removed and a followup colonoscopy two years later came out clean. We need more people like you in the trenches getting the word out to people who say "it can't happen to me!" Best of luck!

dboyce and bookbinder like this
dboyce

Posted by @dboyce, Aug 17, 2011

I am so sorry to hear about your nephew. I also have lost friends and family members who ignored symptoms until it was too late. I am glad you subsequently took steps to assess your own health, bookbinder! We all need to be vigilant about being our own health advocates! And help out family members and friends as well!

I have been a pitbull about my own health since my early college days. I've scheduled and received all of the recommended exams and testing procedures at appropriate times since then. Yet, my cancer went undiagnosed and grew for 2 years!

The irony is when I went to the surgeon to get my diagnosis and looked at the series of x-rays taken over a two-year period the nurse placed on the light panel, I knew immediately I had cancer. All of the x-rays clearly showed a tumor, and that tumor had simply been growing larger over that period of time.

So even health pitbulls can fall through the cracks, but learn a lot of lessons along the way! 🙂

debh

Posted by @debh, Aug 18, 2011

jeez deb, i dint know the mams showed the tumor all that time. i guess we should read our own films too eh?
you are a trooper, always have been since you moved to the farm in the ???? not sure if i should say.....lol
good luck girlie=>

dboyce likes this
dboyce

Posted by @dboyce, Aug 18, 2011

As a matter of fact, @debh, I now *do* make it a point to look at my x-rays, and I have my surgeon look at them as well!

My family doctor, who I've had a wonderful working relationship with for many, many, many years now, called me to express his dismay at my diagnosis, after I had seen the surgeon to get the biopsy results. I asked him if he had looked at the films, and he said no, he wasn't a radiologist.

I told him I didn't need to be a radiologist to find the tumor in all three sets of x-rays. It was there, in the same spot. It just looked bigger and bigger as the date of the sets of the films aged up. I suggested he take a look and said he'd see the tumor too.

So it never hurts to have someone else take a second look and/or get a second opinion!

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