Posted on July 17th, 2012 by Admin
Editor's Note: Mark F. 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.
When I turned 53, I was diagnosed with cancer. The cancer was treated with surgery and radiation and I was consequently cured. A couple years later, I was diagnosed with a neurological condition that presented a greater challenge: a rare disease called Multiple System Atrophy (MSA), a progressively disabling condition for which there is no cure. I am now a patient at Mayo Clinic. I have also spent over 25 years on the business side of health care as a medical group administrator, physician practice management consultant and executive recruiter for health care professionals. Because of MSA, I have since retired from my business and turned my attention to patient advocacy. Social media has helped me connect with other MSA patients, raise awareness about the disease, and raise money to find a cure.
We are all future patients. My goal is to elevate the patient’s role in healthcare by looking at the healthcare encounter solely from the patient’s perspective. William Mayo, M.D. stated, “The patient’s interest is the only interest that should be considered.” This does not always occur. There are a number of interests at play in a healthcare transaction: doctor, hospital, payer (insurance carrier or government), pharmaceutical company, medical equipment supplier, etc. The patient perspective often gets lost as these other interests are played out. Besides a medical solution to their problem, patients seek information, perspective, and community. They can find these on social media.
I am using social media to help cope with MSA. When I connect with other MSA patients through blogs and Facebook groups, I feel part of a bigger battle to raise awareness and find a cure. It helps to connect with others dealing with the same condition, to compare experiences, and to learn what has helped others in the same situation. Through social media, I have learned of five other people who have MSA.
Social media can also create awareness about the disease. For example, although there is no cure for MSA today, as a patient I need to feel like I’m doing something to assist in the discovery of a cure; otherwise I am left with a feeling of hopelessness. Posting about MSA on Facebook, Twitter, and my blog gives me a sense that I am advancing my cause.
My family and I quickly learned that one of the major obstacles in finding cures for rare diseases is funding for research. We wanted to be proactive so we launched a fundraising campaign for MSA research taking place at the Mayo Clinic (see http://www.markfreifeld.com). By utilizing Facebook, Twitter, WordPress, LinkedIn, as well as traditional email, we reached out to our personal networks and my business contacts. I am proud to say that over the past four weeks we have raised over $20,000.00 for MSA research at Mayo Clinic. Without sharing this on social media networks, we might not have had the same success.
My goal in participating in this conference is to present the patient’s perspective and to create a mindfulness of the patient needs. I would also take what I learn at this conference and share it with the patient community I have found online. I believe my experience as a cancer and neurology patient can provide credibility and examples of patient needs. Moreover, my 25 years of experience in the health care business provides a unique perspective and understanding of the forces at play for all involved parties. I would also like to share our story of how we have successfully used social media to raise research funds. Finally, I would like to learn from other participants about their experience in the utilization of social media in health care today.
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