Table of Contents
Patients, Families and Friends
Health Care Providers
|Sickle Cell Information Center Web Site|
|Resources 2 - World Wide Resources|
Sickle Cell Information Center Web Site
34,400 hits per day seeking sickle cell information
In 1984, Grady Memorial Hospital opened the world’s first 24-hour comprehensive acute care, Sickle Cell Center. The goals of the Center were to provide 24-hour acute care in a designated area with a dedicated staff, health care consultation, research new treatments, education, and support services to residents of the state of Georgia with sickle cell syndromes. In 1991, detailed clinical guidelines developed over six years of providing 24 hour emergency care in the sickle cell center were published and distributed at no cost world wide by means of a MCH grant. Several teaching resources for patient and professional education were generated over 14 years, but there were no resources to publish and distribute the materials beyond Grady. The growth and acceptance of the World Wide Web led staff in 1998 to investigate developing an informational web site to distribute information at minimal cost.
The mission of the web site would be to provide sickle cell patient and professional education, news, research updates and world wide sickle cell resources. The vision was to develop the best, most comprehensive sickle cell web resource on the Internet. The problem oriented guidelines for sickle syndromes authored by James Eckman, MD and Allan Platt PA-C became the core of the clinical information content. Articles, handouts, and other content was developed by the multidisciplinary center staff from Grady, Emory, and Morehouse for minimal cost. Microsoft Front Page, an easy to learn program for web publishing was used to convert existing text to HTML. Emory University Department of Pediatrics offered to host the site on their servers for no cost. In September 1998, the Sickle Cell Information Center website went "live" on the World Wide Web for all to access (http://www.emory.edu/PEDS/SICKLE).After the site was put on-line, the process of notifying web search engines began. This would allow Internet searchers to find the site by using key words like sickle or sickle cell. The web site was advertised on conference announcement brochures mailed out to healthcare providers, to patients in a newsletter, and to the sickle cell community via email. Several leading medical sites were contacted to review the site as an informational resource and requested to add a link for their viewers.
New content and email responses are reviewed by a Center Advisory Board comprised of Center physicians, physician assistants, nurses and psychologists. Email consultations are now provided to patients and clinicians in countries around the world. All email questions are reviewed by a physician assistant and answered or sent to the appropriate medical staff for a reply.
A mirror website www.SCInfo.org was created in Feb 2002 to allow rapid updates, new technology and an easier to remember domain name SCInfo for Sickle Cell Information. The two sites are equal but the SCInfo site is most current with the Emory site 2 -3 months behind in content.
Customers to the web site include :
Current content areas include: sickle cell overview for the lay audience, an overview for providers, research update, a list of sickle cell clinics and centers, web links, a down load power point tutorial, a frequently asked questions page and a means of submitting email questions. The web site contains sections for health care providers including two online clinical management books, research updates, conference information web links, and news. The sections for patients and family members contain articles in lay terms, a frequently asked questions page, multiple power point tutorials, down load educational coloring books and locations of sickle cell clinics nationwide. There is an extensive list of links to other sickle cell websites. There is a resource page with recommended books, videos, monographs and CD-ROMs. World wide sickle cell educational conferences are posted. There is an informational guide for teachers and employers to help sickle cell patients with basic pain prevention measures.
The frequency of information requests about different topics help direct the development of the next content pages. The news stories about bone marrow and cord blood transplants as cures for sickle cell disease prompted development of a transplant resource page with web links and questions with answers. The website is updated monthly with new information including new web links, new research news, new medical articles and news events. There is a 3,500 member email news list to inform the international sickle cell community about the latest web updates and activities.
The website is a very efficient method of marketing the sickle cell center services to the world. Patients have come from all over the US and as far away as London, England and Saudi Arabia for clinical consultations. The Center is growing by 145 new patients each year. Providers in other state refer many patients due to the website. JCAHO featured the website as an innovational tool in their satellite network broadcast on Patient Rights and Education in August of 2000. The site is on the first page results of the following search engines including Netscape, AltaVista, lookSmart, Ask Jeeves, MSN.com, Hot Bot, Lycos, Google and Yahoo. Several leading medical sites have links to the Sickle Cell Information Center including: AMA, ACP, ACEP, AAP, NAPH, Mayo, HON, and Medindex. CNN has used the website as a reference for several news articles about sickle cell disease.
Web statistics from the Emory University web support team showing sustained growth over 1 year:
Daily E-mail questions: 10
Maintenance time/month: 10 hours
A new website is in development www.SickleCellKids.org directed by local artist Cynthia Gentry, to teach children and parents about sickle cell disease using colorful animation’s, inspirational stories and educational cartoons. This family friendly site will have educational materials that will be fun to view and allow inter-activity using the latest tools in web design. Content is reviewed by the center staff and is guided by patient and parent focus groups. There will be lessons on the body and blood, interactive quiz shows, comic illustrations that reinforce healthy living, and pain management content. Several celebrities have authored inspirational notes to the children to be viewed while content downloads. These include:
The Web is a wonderful tool to improve patient and provider education, communication, and satisfaction. Grant funds will be sought to provide patient homes with web-TV devices for $100 and Internet connections to allow two way communication, even low cost video consults. This could be a model for disease management for safety net hospital patient populations by improving access in a very cost-effective manor.