With social media, parents of children who have autism have a medium to share their experiences. But social networking sites lack the privacy protections that parents want for health care information.
The National Autism Network has launched a social network geared specifically to the autism community. It offers features that might seem familiar to users of Facebook, Twitter and LinkedIn along with protections that other networks can’t. The autism network’s offering is compliant with the Health Insurance Portability and Accountability Act, or HIPAA, a federal law that includes privacy rules for patient health care information.
“It’s an extra layer of security,” Cari DeCandia, co-founder of National Autism Network,said. “It makes members feel safe.”
Autism affects 1 in 88 children, making it the fastest growing development disability in the United States, according to the Centers for Disease Control and Prevention.
Cary-based National Autism Network aims to provide an online resource for the autism community. Cari DeCandia and her partner, co-founder Denise DeCandia, started the company in 2011.
Cari said that the initial goal was to create a social network. But along the way, they realized that while the Internet offers a seemingly endless supply of information there isn’t a single source for finding information on autism. Cari and Denise spent nearly two years compiling information and making it accessible.
National Autism Network’s website launched in March and it offers information on education, treatment and research. The social network offering went live this month. Cari said that the social network took longer because the technological aspects of the network, including protections for health information, made the social network the bigger challenge. The website and the social network are hosted on a HIPAA secure platform.
Many parents create Facebook pages where they can share autism information with family members and others who have an interest in the welfare of a child. But “friending” a physician on Facebook is a no-no, said Denise, a behavioral analyst with nearly 20 years experience in the autism community. The ethics of medicine as well as privacy policies governing the sharing of health care information prevent doctors from being friends with patients on social networks.
The National Autism Network’s social network includes features reminiscent of other social media offerings. The “like” feature on Facebook is represented in the autism network as a “high five” or a “hug.” And like LinkedIn, the autism network offers ways for community members to connect.
The autism community has different networking needs and the social network needs to reflect that, Denise said. Parents of children with autism deal may deal with as many as five or six different care providers, such as speech therapists and behavioral specialists. With the National Autism Network’s offering, users can post updates that can be seen by the child’s providers – and only those providers. The system can also store information in the network for reference all in one place.
“That’s not something that I can do over Facebook,” Denise said.
Nearly all of the information on National Autism Network’s website is free to anyone. But those who choose to become a members can access the social network and have access to more features, including webinars conducted by industry experts and connections to other parents in the network. They’ll also be able to reach out to health professionals to ask questions. This access costs $9.95 a month; $19.95 a month for health care providers. Annual and lifetime memberships are also available.
Cari and Denise have bootstrapped the National Autism Network so far. Besides membership fees, they also plan to raise revenue through advertising on the site. So far, the site has slightly more than 4,000 members.
“There’s not a shortage of information but there isn’t one centralized place for families and parents to find information,” Cari said. “We wanted to simplify that for the community.”