Posted on July 16th, 2012 by Admin
Editor's Note: David O. is a patient/caregiver who submitted the following essay as part of the Mayo Clinic Center for Social Media Patient, Caregiver Scholarship Contest. To vote, simply use the Facebook "Like" or Twitter "Tweet" buttons at the bottom of each post to share or leave a positive comment. The top vote-getters will be finalists.
My Story: Early October 2011 I was diagnosed with “Nasopharyngeal Carcinoma with Widespread Metastasis to Bone, Stage 4.” I have undergone six chemotherapy treatments, five PET Scans, received two transfusions, and while the last scan was “clear,” the cancer will return; it is not curable. I have chosen to focus on living, not dying, and wish to make a difference for others facing this cunning, baffling disease.
I have created a blog (http://dbocancerjourney.blogspot.com) to teach others about my experience (41,600 hits-to-date), appeared “live” from New York on the CBS This Morning Show with Charlie Rose, am writing a book about my experience, my story has been told in 800 media outlets, and I have been a guest on numerous radio shows. The ten teaching videos-to-date on the blog have appeared on YouTube and Facebook as well.
Along with my #1 caregiver and wife, we have addressed 104 first-year medical students and 30 resident physicians about my experience of receiving “bad news,” and about my treatment experience (particularly with medications, chemo side effects, coping, caregiver stress, use of time, and multiple decisions made at critical stages). I have addressed a community class of 75 attendees at an institute of lifetime learning, a 60 member church class, and 80 nursing home administrators and directors of nursing at an annual spring conference of WISH (Wisconsin Illinois Senior Housing association).
Responses to our videos from the general public, medical students, university professors in the social sciences, and others, have shown that the “greater good” is being served. We have especially been brought to tears by the number of caregivers and persons with cancer who tell us that the patient education they received, or are currently receiving, about their disease was and is inadequate, not clear, and all too brief. This is particularly the case with regard to informing patients what to expect in terms of side effects and how to treat them when they show their ugly heads.
During and after the conference I will commit to sharing my story covering how I spread the news and experiences through social media described above, and in addition, these particular highlights: using social media to keep family, friends, and colleagues informed; using media to share my story with kindred souls who are either caregivers or persons with cancer and other terminal diseases, and the desire to produce a collage of all my Blog, YouTube, and Facebook videos-to-date. The intended purpose will be teaching the general public and professional members of health care teams about this dreaded disease from a patient perspective, and with this information, how to better meet the health care needs of terminal patients.
I hope to learn how to better package my experience for wider audiences (such as nurses, social workers, pharmacists, and others – including those in current practice as well as students, residents, and fellows in various medical and other schools). My wife and I are clearly amateurs, all of our videos were produced with a flip camera, and we are sure there is an easier, better way. Our titles are probably not user-friendly in terms of using more strategic “key words,” and the potential use of twitter would be fascinating to explore. How to more effectively use Facebook, YouTube, and Twitter in disseminating this information would be extremely valuable.
To conclude, I hope to be a participant at the Summit, but if not, I encourage and applaud this approach to improving medical practice. Patients and caregivers see the whole picture they experience the full trajectory of care, whereas in our fragmented health care system, skilled professionals only see one niche, rarely meet as a “team,” often resulting in missed process improvement opportunities.
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