Welcome to the Health Care Social Media List, courtesy of Mayo Clinic, which shows which hospitals, by state, are active across social media on YouTube, Facebook, Twitter, LinkedIn, FourSquare and blogs. The Mayo Clinic Center for Social Media (MCCSM) works to “accelerate the effective adoption” of social media in health care.
This post, published on October 26th, speaks to some of the topics addressed in this chapter:
Melissa Hogan is a lawyer, author, speaker and as she would tell you, most importantly an advocate for rare disease families. Her efforts in the areas of advocacy, medical research, fundraising, and pharmaceutical and clinical trials made her a scholarship attendee at this year’s Health Care Social Media Summit at the Mayo Clinic.
Her speech during the panel “Social Media Gives Patients a Voice. Are You Listening to It?” reveals the struggle of her son Case being diagnosed with MPS II, a rare lysomal storage disorder. Her frustration on the lack of information or options encouraged her to turn to social media for support and advocacy. Her social media answer was to create Twitter, Facebook, Pinterest, YouTube, LinkedIn accounts to spread her message as well as launching the website SavingCase.com, a site she utilizes to raise awareness and give updates on Case’s participation in the first intrathecal clinical trial for MPS II.
The statement “Her frustration on the lack of information or options encouraged her to turn to social media for support and advocacy” speaks to Murthy’s observation that, in the Twitter audience, patients and parents of patients can find a support network (124) and feel comforted by the telepresence of their Twitter “domain” as well as to the fact that the most active Twitter networks exist to discuss chronic or life-changing illnesses (128). Albeit on her blog, Hogan also gives updates during her son’s clinical trial. Due to what she cites as a “lack of information,” she has turned the “monologic health dicta” – silent in this case – into a dialogue, where anyone with Internet access can be a content creator and communicator (124), a trend which mirrors a shift towards interactive journalistic practices. She took the investigation upon herself. An aggregator of information related to the syndrome, she provides an example of the non-medical professional who has gained authority and expertise in a field and utilized the ability of Twitter to connect patients to experts with whom under other circumstances they would not connect (130). On her “sites” page, she connects visitors to Dr. Joseph Muenzer, “the leading physician and researcher for Hunter Syndrome in the United States and likely the world,” in addition to other online communities dedicated to support and information about the syndrome.
A few of her tweets also address topics discussed in the chapter:
savingcase The Negative Effects of Separating Children with Disabilities goo.gl/PDrhu #SpEd #IEP #inclusion 3 days ago · reply · retweet · favorite – See more at: http://www.savingcase.com/index.php/tweets/#sthash.EIkHX7xk.dpuf
This, alongside, her visitor map and guestbook, speaks to the fact that in a “more atomistic society… Twitter has become an importance venue” and “illness has removed itself as a factor contributing to social isolation” (116). Her tweets mirror the structure of her blog in following a medical support group format.
savingcase RT @mvennitti: This is abt patient centered knowledge/advocacy. Read “Crowdsourcing Cures” on Siren Song: bit.ly/SX2oV8 #raredisease 5 days ago · reply · retweet · favorite – See more at: http://www.savingcase.com/index.php/tweets/#sthash.XeI0wMem.dpuf
savingcase Knowledge is leaky now. Farewell to centralized control; hello to rapid spread and discovery. « e-Patient Dave goo.gl/EbvFF 6 days ago · reply · retweet · favorite – See more at: http://www.savingcase.com/index.php/tweets/#sthash.XeI0wMem.dpuf
These tweets speak to the change from a monologic to a dialogic health dicta (e.g. “Farewell to centralized control”) and, even more so, patient empowerment (131). Notice that the first is a retweet of a patient with another rare disease.
[On the topic of geolocation: SavingCase.com has a “Traffic Feed” and recognized that I accessed the site from Brunswick, ME. THE INTERNET KNOWS EVERYTHING.]