About eight in 10 psoriasis patients who use health care social networks say they do so primarily to learn how others manage their disease, and get practical tips and advice they couldn’t find elsewhere, according to a survey conducted by the National Psoriasis Foundation, Manhattan Research and Inspire, a company that builds and manages online patient communities.
The millions of people with psoriasis, including the one million visitors to TalkPsoriasis in 2012, are not alone in their use of social media for health. A 2011 Pew Research Center study found that one in four Internet users living with a chronic ailment have gone online to find others with similar health concerns.
Psoriasis is a chronic, genetic disease of the immune system that causes the skin to crack, itch and bleed, affecting roughly 7.5 million Americans. It is the most common autoimmune disease in the country.
Psoriasis patients tend to use social media more for practical advice rather than online emotional support, underscoring the value that increasing numbers of patients have for peer-to-peer health networks. Nearly half of psoriasis patients (48 percent) who do not have support from their friends and family say they use social media regularly, the study finds.
“Psoriasis is a serious disease that impacts the individual physically, socially, financially and psychologically. The more that people with psoriasis are able to connect with others and find support and information through platforms like social media, the less isolating the disease can be,” said Catie Coman, vice president of marketing and communication for the National Psoriasis Foundation.
“Members of TalkPsoriasis in Inspire tend to be younger than those in some other disease areas in Inspire, and they regularly discuss treatments for psoriasis and psoriatic arthritis,” said Brian Loew, CEO of Inspire. “These members exchange detailed personal experiences. They work with their physicians and incorporate what they learn from their peers to actively evaluate and make decisions about their treatments.”
Other findings from the study reveal that:
- Use of and reliance on social media varies depending on the severity of the disease. Thirty-five percent of those with moderate to severe psoriasis belong to one or more social media sites versus 15 percent of those with mild psoriasis.
- People with moderate to severe psoriasis are more likely to use social media for online emotional support (50 percent) versus those with mild forms of psoriasis (33 percent).
- Psoriasis patients are avid users of social media: 70 percent use any type of social media at least several times per week and 44 percent use psoriasis-specific social media sites several times per week.
Learn more about psoriasis at www.psoriasis.org.
Noe Baker is public relations manager for the National Psoriasis Foundation, the world’s largest nonprofit patient advocacy organization serving the 7.5 million Americans living with psoriasis and psoriatic arthritis.
John Novack is communications director of Inspire, a Princeton, NJ-based company that builds and manages online support communities for patients and caregivers, and helps connect patients to researchers.