Social Media All Stars: Patients

Most of us arent lucky enough to have a doctor in the house, so it makes sense that 80 percent of Americans turn to the Internet to get information about diseases, procedures, doctors, hospitals, drugs therapies and other health-related issues. However, thanks to a boon in social media and proliferation of patient bloggers, todays patients are not just seeking information; theyre sharing their knowledge and insight that could shape treatment therapies, ensure patient rights are protected and respected, and ultimately help improve health outcomes.

Patient bloggers and online advocates are using social networks to connect with others, launch advocacy and disease awareness campaigns, and shed light on what its like to live with a chronic medical condition and online tools they use for managing it. Heres how some social media all stars are using their influence to share with and educate others:

Blogger: David Seidman

Blog: Toastiest

Blogger David Seidman, a Raleigh-Durham resident, often posts from his dialysis treatments, and he needs a kidney transplant. Pulling no punches, he paints a real picture of what its like living with kidney failure and even while he praises the things that his doctors and medical facilities get right, he makes it clear that even under the best of circumstances, “treatment sucks. And if infests my entire life.

Patients in similar circumstances will relate to the realities of life interrupted by dialysis treatment and appreciate the updates on his recent nephrectomy and recovery, but readers come back for more because David is more than just a patient; hes a real person who loves his cats, remembers those who have passed, and offers clear opinions on why his local Whole Foods needs to do a better job of display marketing. In other words, he connects with his readers on a personal level while distilling valuable information.

Blogger: Jenni Prokopy

Blog: Sick Chicks

Twitter: @chronicbabe

Go out to dinner with a group of 50-year-old women and its only a matter of time until health topics surface, but for young people living with chronic pain or other illnesses, where can they find support? At Sick Chicks! Blogger Jenni Prokopy started her blog in 2005 to create a space for other young people to share their experiences and successes, providing hope and inspiration to her many followers. In addition to highlighting other bloggers and sources of information, Jenni is an avid social media user and encourages others to be more than passive readers; she asks readers to contact her via instant messenger, shares pictures via Flickr and even runs a bi-weekly blog carnival that includes posts from some of the best women health and medicine bloggers.

Blogger: Regina Holliday

Blog: Regina Hollidays Medical Advocacy Blog

Twitter: ReginaHolliday

Patient advocate Regina Holliday is committed to the increasing need for clarity and transparency in medical records. Best known for using paint and art to promote health reform and patient rights, she also uses her blog and Twitter to raise awareness and serve as a champion for optimal medical care. By doing so, shes empowering others to lend their voice, further the conversation and extend education about public health.

Blogger: Amy Tenderich

Blog: Diabetes Mine

Diagnosed with Type 1 in May 2003, Amy uses a range of multimedia video, photos, blog content, and published pieces to share what shes learned through her journey with diabetes. Part of Alliance Health Networks, the blog is a goldmine for personal experiences and medical insight and is a welcoming community for others living with diabetes. Visitors are encouraged to participate either by contributing content or adding to discussions in the comment section, but are reminded that everyones experiences are different, setting the tone for mutual respect and learning.

Blogging or sharing knowledge on Facebook orTwitter can be therapeutic for the writers and valuable for readers looking to learn more and find others with similar experiences and concerns. The influence of bloggers and social media is growing. With patients having a louder voice, doctors, pharmaceutical companies and other health care practitioners need to listen to whats being said and use this valuable feedback to influence their own practice.

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  1. Pingback: You are not Alone: How Social Media can Help you Manage a Health Condition | Treato Blog