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refusing to answer required questions

From: Thomas M. White, MD <tw176@columbia.edu>
Date: Fri, 01 Feb 2002 13:59:53 -0500
Message-ID: <3C5AE5A9.36A24A46@columbia.edu>
To: "www-forms@w3.org" <www-forms@w3.org>
CC: www-forms-editor@w3.org
Hi-

I'm new to this forum, but I've been addressing similar concerns within
the realm of psychiatric and medical informatics via our own approach to
implementing forms.

Paul Sagi's concern re privacy is especially true for forms and interviews
within medicine,  psychiatry, and epidemiology research.  In each of
these, people need to be given the opportunity to refuse to answer
questions, even if they are "required" by the form or underlying data
schema.

We have found that, in general, all required elements might need to
support these additional options for "not answering" a question:  (1)
refused (e.g. for people who refuse to answer a sensitive question), (2)
don't know (e.g., "do you have a family history of <rare disease X>"), (3)
huh? (e.g. the person doesn't understand the question), (4) NA (e.g. if
the question isn't applicable for the person, even though the programming
logic suggests that it is -- an error in the logic).  Survey / polling
research often also needs (5) no opinion.  We have associated each of
these with separate comment fields so that if any of these options are
selected, the user is able to optionally specify their reason for
refusing, etc.  In fact, the committees that oversee research often
require that subjects be allowed to refuse to answer questions.

From an XForms perspective, I'm not sure how this would be addressed.
XML-Schema can be used to generate <union> structures which support these
additionally allowable responses for each data element, but that seems
potentially burdensome upon the authors.  Moreover, these exceptional
answers should really have distinct user interface features from the main
options (for example, we implement them as buttons to the right of each
question; and the visibility of each button is determined by the privilege
level of the users -- e.g. interviewer vs. interviewee).  Thus, not only
is this a compound data type, but it is a compound user interface element
with refuse, etc. buttons whose visibility are controlled separately from
the visibility of the main data element.

Can this type of functionality be supported by XForms?  If not, I
recommend that it be added, otherwise XForms might have limited use within
medical research settings.

/Tom

--
Thomas M. White, MD, MS
Assistant Director
Bureau of Evidence Based Medicine and Practice Guidelines
New York Sate Office of Mental Health
330 Fifth Ave, 9th Floor
New York, NY  10001
212-330-6358 (T,W,Th)
212-543-6724 (M,F)


Paul Sagi wrote:

> it should be possible to view an online form and see what information
> is requested, before filling out the form; rather than fill out a
> page, click on "next" or "continue," fill out the next page... before
> discovering what info will be requested. further, it should be
> possible
> to interrupt filling out the form and return to it later, preferably
> at the point one left off, thus mimicking hardcopy. until and unless
> online forms conform to the characteristics i've stated above, online
> education, banking, ordering of merchandise and other online
> activities cannot and will not reach their potential. many online
> transactions are abandoned partway through. why? it's those damn
> online forms that require filling out of many boxes, not allowing
> proceeding to the next page until the form is complete, not allowing
> viewing the form before filling it out and not allowing going back and
> forth through the form.  those characteristics were thought to be
> great, force people to fill things out in an orderly consistent way
> and data is easy to obtain. but people resist control and have
> curiosity.  they also have lives outside filling out forms, phones
> ringing, kids coming home from school, etc., that demand they abandon
> the forms for awhile, to return to them later. people also want to be
> able to make informed decisions, which they cannot when information is
> hidden in forms and cannot be accessed because they have not completed
> the previous page of the form. asking for completion of a page of a
> form before showing the next page of the form is saying "i'll give you
> some information if you'll first give me some information." that flies
> in the face of peoples' expectations about informed consent and
> informed choices. imagine the anger and frustration of someone who
> fills out 4 pages of forms only to find on the last page that they are
> required to provide information they consider private and confidential
> and don't want to give. what do they do? abandon the transaction in
> disgust and don't return to that website. they also become reluctant
> to deal with similar forms on other sites. once bitten, twice shy.
>
> Fertilise a mind - plant an idea.
>
> __________________________________________________________________
> Get your free Australian email account at http://www.start.com.au
Received on Friday, 1 February 2002 13:59:56 GMT

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