E Health and Disabilities
Oakland, CA, April 4 - 5

40 people sat at a U shaped table in a very large room; the short side of the U had 10 seats across.
Ed Penhout, Dean, UC Berkeley School of Public Health welcomed; then Judith Heumann; Marilyn Hamilton, wheelchair designer and board member of the funder, CA Endowment (the foundation created when Blue Cross was required to divest).   Disability was understood from the civil rights/human rights perspective.  The goal of the summit was to develop an e health agenda driven by people with disabilities.  The keynoter was formerly employed by the west coast Lewin Group and the audience gasped when she said "wheelchair bound" and "incapacitated."  She said the health care paradigm is stalled, that consumers and technology will be the drivers, that physicians know that paper records are not confidential, that it isn't privacy that is an obstacle -- if we can bank we can do medical records -- but that the biggest barrier is lack of interoperability of the various medical systems and that HIPAA is a start.  She drew an analogy between orphan diseases, orphan drugs, and technology that might help only a few people with disabilities would become orphan technology, no profit, no attention.    Universal design is a way to address that and Deborah Kaplin, WID, noted the harm language can cause and cautioned against associating the word "orphan" with technology.  The keynoter's research says that the digital divide is mostly economic (but I've heard people argue there is also a cultural divide). 

There followed a number of brief presentations, laying the groundwork for the work groups that will come later.  June Kailes raised concerns about literacy, translation, content.  Bruce Bronzan is developing an on-line case management system and Santa Cruz has invited him to give a demonstration.  He's a former elected official, a member of the CA assembly.  He said that 20 e mails or letters got attention, and when you get 1000, you stop and go home to your district to speak directly to your constituents.  Sean Ennis emphasized how important "doing it right" is important to accessibility; good web design can become accessible to voice output, speech recognition, ... .  The CA e government site is fully accessible and all the *main* page documents are at an 8th grade reading level; CA had a Director of e government, Arun Babeti, a presenter I found fascinating.  Total redesign budget 2.1 million. 

I spoke with the focus and brevity and density that I've learned here on the Internet, and was well received.

Kaplan: The experience of aging is changing.

E health: information, support, local resources with significant consumer input and disability specific perspectives.

An agenda for action steps was developed and I will post the web address when I have it.

At a smiliar mental health meeting, the major concerns were privacy and transparency.     Here the key issues were access and relevancy

Web sites mentioned :

http://lila.ucla.edu - LA specific and interesting example of community resources
www.my.ca.gov

 

 
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