Monday, October 20, 2008

Maryland man brings medical information to deaf community

Casey Davis discusses why he decided to create http://www.deafmd.org/ with the Carroll County Times in Westminster, Md. (Full disclosure: The author of the article is a former student of mine. Good Q&A, Erica!)

Westminster resident Casey Davis has satisfied his interest in serving the deaf and hard of hearing communities by making a Web site, http://www.deafmd.org/. The Web site displays information from the Centers for Disease Control and Prevention in sign language.

Q: How did you come up with http://www.deafmd.org/?

A: In grad school, which was Lock Haven [University of Pennsylvania], we were encouraged to focus, on an underserved population and as I was sitting in church one Sunday I looked over and saw the sign language interpreter and thought ‘I wonder how underserved the deaf population [is]?’ So I went back and started doing some research and found very few providers despite 1 [million] to 2 million sign-language-dependent persons in the United States. It’s the third-most [used] language behind English and Spanish; they are definitely underserved.I started doing research to find a way to reach as many [people who are] deaf as I could, so the Web site was the way of doing it.

Q: How long did it take you to develop the site?

A: It’s taken five years.

Q: Were there things on the site you wanted to specifically include and things you specifically wanted to exclude?

A: I wanted it to be a lot like http://www.webmd.org/, but it had to be sign language driven, video driven. The syntax and grammar is completely different in between [sign language and English]. They are English words, but they are not English sentences, if you will. There is such a wide range of sign ability and mental capacity that you have to make it understandable to everyone without losing anything. You try to make it as basic as you can without oversimplifying. Part of the reason it’s taken five years is because I’ve been funding it myself, haven’t had any sponsorships or advertisements on the site.

Q: Are there medical conditions that a Web site that caters to the deaf would have?

A: Not necessarily. One of the things I really wanted to put in there was a database of deaf-friendly providers.The Americans with Disabilities Act states that Americans with disabilities should have equal access to services — whether they are auto repair or medical care, it doesn’t matter. It guarantees them to have, what they call, effective communication.A lot of doctors say, well that’s pen and ink, writing notes back and forth, or that’s having a family member interpret. Because the syntax and grammar is different, writing notes is not the way to go, and having a family member interpret, that’s a HIPPA violation. If your mom had cancer and maybe there was only three months to live, you might filter that information out and not be completely truthful to her as to what her medical condition really is, so there is a conflict of interest between family members there or an emotional attachment that you want to protect that person.

I’ve tried to compile a database of deaf-friendly doctors, providers, health specialists; and you can search by state and find out where certain providers are. The doctors will either sign, have a staff member who signs or will pay for a qualified interpreter to be present in the office.It seems to me that deaf people do have more health complications, but I think it’s from a lack of education, not necessarily that they are sicker than anyone else. They might have questions about specific disease illnesses like Waardenburg or Usher syndromes, which cause their deafness, but other causes of things to be wrong with them, really diabetic, high blood pressure [are things they want to know about].

Q: How frequently do you update the site?

A: We launched Sept. 26, so honestly we are not looking to update. We are looking to constantly add information. We have an e-newsletter; we send an e-mail when new information is added to the site. In the last 15 days, we’ve had 25,000 visitors to our site, [and] we have not marketed.I went to one show in Chicago and met about 2,000 deaf people and that’s been our only direct contact. We are excited about the number of people who have seen this already. Since we don’t have funding, we are going to grow slowly because I can’t afford it. It costs a lot of money to hire an interpreter and post information to the site. It’s not a cheap process, but it’s one that I believe in; that’s why I put it out there. People have the opportunity to donate to the site, but we are not seeing that happen.