Maximizing Public Health Awareness to Underserved Populations Through Social Media

Background:  Epilepsy is a chronic condition affecting the quality of life for families across the nation. 2.2 million Americans have epilepsy, with 150,000 new cases diagnosed in the US each year. The onset of epilepsy is the highest in children and older adults. Children and youth with epilepsy need access to highly qualified physicians and medical homes to properly diagnose, treat and manage the condition. The National Epilepsy Foundation works to improve how people with epilepsy are perceived, accepted and valued in society. In 2004, the Foundation established the National Center for Project Access to improve access to coordinated, comprehensive care for children and youth with epilepsy with a particular focus on children and youth residing in medically underserved and rural areas. Project Access stands out as a national model supporting patient and family-centered care among physicians, parents, communities and schools.

Program background:  The Web and social media have changed how public health organizations share health messages with the public. These technologies help health communicators and their audiences create more dynamic, interactive and ongoing discussions online. The audience receiving the information is increasingly being more involved in the process by taking the information, responding to it and sharing it within their own networks. The Epilepsy Foundation, along with Project Access, uses an array of tools to improve practice, access and bridge the divide with underserved populations; these tools include: the Foundation website, NCPA website, Google Access, Facebook, Twitter, YouTube, blogs, and webinars/webcasts.

Evaluation Methods and Results:  In addition to these communication tools and technologies, Project Access developed the Epilepsy & My Child Toolkit that serves as a resource guide and information referral source for parents/caregivers of newly diagnosed children.  The Toolkit assists users in organizing medical information, facilitating communication in care coordination and accessing relevant and accurate information and support.  Parents also benefit from the practical guidance and advice from the Toolkit’s DVD which chronicles the experiences of families raising a child with epilepsy.  Since its inception in 2010, over 2000 Toolkits have been distributed to individuals, Foundation affiliates and grantees, hospital/medical centers, and non-profit organizations.  The majority of health care providers and parents/caregivers appreciate the accessibility, portability and readability of the toolkit.  The Toolkit has been so widely received that some grantees have translated it into an electronic version on their website, flash drives, other languages and a Newly Diagnosed Backpack Program for youth and their families.

Conclusions:  Project Access aims to arm parents and health care providers with the right medical, educational and treatment resources.  The recent release of the report by the IOM Committee on the Public Health Dimension of the Epilepsies provided additional recommendations on increasing health literacy and public awareness.   Furthermore, the possibilities of new innovative ways to expand Project Access and the Toolkit are being explored including the creation of an advanced Toolkit with more technical information. 

Implications for research and/or practice:  This presentation will provide attendees with innovative communication strategies for comprehensive information dissemination and care coordination services for underserved children, youth and their families.