[Blindtlk] Healthcare information survey

[Madeleine Rothberg]

Hi Mike,

I can understand that you might have survey fatigue! There are a lot of
surveys out there, and I've recently read that research shows response
rates are down for all kinds of surveys. So you are not alone.

But I thought I'd take a minute to explain why we think it is useful to
ask people with disabilities about their healthcare information needs and
preferences. You might be right, and we might find that people with
disabilities have the same healthcare information needs as all members of
society. If so, that is useful information and we can use it to advocate
for making all healthcare technology accessible.

Or it might be that people with disabilities have some concerns that
others don't have, or have different priorities. For example, we might
find that people who are deaf are very interested in an electronic system
for making appointments and checking test results, because it replaces
inaccessible phone calls. Or we might find that people who are blind have
a stronger need for electronic access to their own health records and to
health education information because printed information isn't accessible.
Unless we ask, we can't know for sure, so we decided to put this survey
together. We will use the results to prioritize our next step, making
accessible prototypes for some healthcare information tasks.

As always, we appreciate responses from those who have time and understand
that not everyone will participate.

Thanks again,
Accessible Designs for Personal Health Records Project staff



On 8/3/12 11:20 PM, "Mike Freeman" <k7uij at panix.com> wrote:

>Why do the surveyors think that what is important to people with
>disabilities is any different from what is important to the rest of
>society?
>
>Frankly, I'm getting rather tired of people (even our own members)
>surveying
>everything about the blind or otherwise disabled. Lord, if we filled all
>of
>these surveys out, we wouldn't have time for anything else -- like going
>to
>the doctor! <evil grin>
>
>Mike
>
>
>-----Original Message-----
>From: blindtlk-bounces at nfbnet.org [mailto:blindtlk-bounces at nfbnet.org] On
>Behalf Of Madeleine Rothberg
>Sent: Friday, August 03, 2012 11:19 AM
>To: blindtlk at nfbnet.org
>Subject: [Blindtlk] Healthcare information survey
>
>You are invited to participate in a short survey asking what healthcare
>tasks and information are most important to consumers.
>
>Inglis, The Children¹s Hospital of Philadelphia, and WGBH¹s Carl and Ruth
>Shapiro Family National Center for Accessible Media (NCAM) are
>collaborating
>on a joint project to explore how people with disabilities can use
>technology to manage their own healthcare. This project is funded by the
>U.S. Department of Education, The National Institute on Disability and
>Rehabilitation Research (NIDRR Award: H133G110095).
>
>This survey will help us understand how people with disabilities can
>access
>their medical information to manage their healthcare. It asks what
>healthcare tasks and information are important to you. Later in the
>project
>we will explore in detail how to make the technology that supports these
>tasks accessible to everyone.
>
>Please follow this link to the survey. We expect it will take about 10
>minutes to complete.
>http://tinyurl.com/accesshealthrecords
>
>Thank you very much for your time. If you have any questions or concerns,
>contact us at ncam at wgbh.org
>
>
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