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Nov 6, 2013 · Leave a Reply

Patients, families find comfort and help by sharing stories via social media

By Hoyt Finnamore @HoytFinnamore

Panelists at Mayo-hosted Health Care Social Media Summit discuss how social media has helped them, their families and their peers.

It was hard to miss one recurring theme at the Health Care Social Media Summit, which began Wednesday, Oct. 23, in Rochester and wraps up today: The patient experience is at the center of health care social media efforts. And if it isn't, it should be.

Social media has given a voice to patients who want to talk about their illnesses and health care experiences. "It allows everyone to be a journalist," says Lee Aase, director of the Mayo Clinic Center for Social Media. Aase hosted a panel of presenters who were at the summit specifically to share their inspiring stories and talk about why patients blog, Facebook, tweet and pin about their experiences. Each of the presenters had a unique story to tell and was there "on the house" after winning a scholarship essay contest.

Annie Mitchell — the power of "story" and patient "voice"

Annie Mitchell became convinced of the power of stories and the patient voice in social media during her daughter's battles with juvenile dermatomyositis, a rare and debilitating disease affecting the muscles and skin. Her experience led her to a role as director of social media for the Cure JM Foundation, with the goal of helping to educate others about juvenile myositis, raise funds for research, and empower other patients and their caregivers through community connections and resources.

"In 2007, life knocked the wind out of me," Mitchell says. Her daughter, Grace, was diagnosed with juvenile myosistis as a 10-year-old, and over several months, Mitchell watched as the disease took a toll on her daughter. "We had to climb the Mount Everest of learning about the condition — alone."

Mitchell says she began to share the family's medical journey on Facebook. And in the process, she says, "I was able to move from powerlessness to advocacy." Eventually, she found the Cure JM Foundation. "We were no longer alone," she says. The experience led her to approach the foundation and suggest that they create a Facebook page of their own for patients with juvenile myositis and their families. Connecting with others, she said, had helped her family "through terrifying and lonely time."

The foundation brought Mitchell aboard to start the Facebook page and other social media efforts. Since that time, she has helped the organization win two grant contests bringing in $300,000 to put toward research and advocacy by activating and engaging the community through social media. Mayo's Ann Reed, M.D., is a member of the all-volunteer organization's medical advisory committee.

Teri Robert — Finding hope and purpose through education, advocacy

Faced with disabling chronic migraines and failed attempts at medical intervention, Teri Robert took to the Internet looking for answers. She was not impressed with what she found — inconsistency, difficulty separating accurate from inaccurate information. That experience led her to become a patient educator and advocate in the area of migraine disease and other headache disorders. Her passion is for helping patients, building awareness, fighting stigma, and engaging and educating the public.

"Patients who learn to stand for themselves and others have more hope and sense of purpose, and increased sense of self-worth," Robert says. Not only that, she says, but "studies show that an educated patient is more involved and in treatment and we have better outcomes."

That's important in the world of migraine, in particular, she says, because "one of the biggest things we fight in the world of headache medicine is stigma and lack of understanding." One key antidote is patients partnering in treatment with doctors in an "atmosphere of mutual respect," she says.

Social media can help by providing tools to reach patients who are hopeless and isolated, teach patients to ask the right questions of doctors and support them in the process, and teaching patients to advocate for themselves. "The doctor isn't the only professional in the room," she says. "Who is the professional in terms of your body?"

Pamela Tom — A nonprofit organization of one

Pamela Tom is the founder of HPVANDME.ORG, a nonprofit organization dedicated to building awareness about human papilloma virus (HPV) infection and HPV oropharyngeal cancer. She founded the organization after her husband was treated for HPV throat cancer in 2012.

"My husband went to doctor after feeling lump in his throat," Tom says. After being told it was it was simply post-nasal drip, he returned home. But it got worse. Return trips to the doctor's office didn't offer a better answer, she says, and soon her husband was barley able to eat. So they visited an ENT specialist, where they learned he had cancer.

Surgery wasn't an option, so her husband underwent seven weeks of radiation and chemotherapy. Her husband is an optimist, Tom says, and dutifully went through treatment. But she "had a million questions." So she went online and found that the information available was dense and hard to sift through, even though she says as an experienced reporter, she was used to digging into detailed information to find answers.

That led her to try to find a better path for other patients and their family members. "I wanted to build an awareness campaign that was more user-friendly that people could get through and share," Tom says. So she registered as a 501c3 nonprofit and began a crowd-funding campaign on IndieGoo to raise funds to launch a news and information website.

Tom says she works on the cause at night and on weekends "because somebody has to." Why? By 2020, the number of cases of HPV-related oropharyngeal cancer in middle-age non-smoking men will surpass the number of cases of cervical cancer, she says. And it's difficult to get people to be vaccinated, even though the cure for the condition is just that simple.

Watch video interviews with each of the panelists below. 

Tags: Annie Mitchell, caregiver, Cure JM Foundation, ePatient, headaches, HPV, HPVANDMEORG, human papilloma virus, juvenile myosistis, migraines, Pamela Tom, Patient Advocate, Teri Robert

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