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A post to the H-Bridge mailing list about why patient prefer to use on-line sources of information
This lady asked the H-Bridge mailing list for ideas and this is her summary.
Folks,
Thank you to everyone who replied to my enquiry last December
as to why patients and their families turn to on-line
resources rather than other resources for medical information.
I thought you might be interested in my summary of the
replies I received:
1. For some medical conditions, on-line resources offer
the *only* way to get medical information about diagnosis,
treatment options, and so on.
2. It is the best way to find other patients and their
families, and to gain emotional support and medically relevant
information from that contact.
3. On-line resources are available 24 hours a day,
7 days a week, 52 weeks a year.
4. You can take your time and search for the particular
information you want.
5. You can access information from the comfort of your home
or office.
Privacy concerns were generally downplayed though one person
did mention anonymity as an advantage.
There were, however, several comments about interpersonal
issues in information gathering that really interested me.
These comments seem to get to the heart of what I was
concerned about when I asked in my original question
if there was empirical evidence to support privacy
concerns. It seems that privacy per se is not a major
concern, but there are other person-to-person interaction
issues in information gathering that are important. Here are
examples of what some people have reported experiencing:
* a feeling of frustration from trying to "pry" information
out of care providers
* a sense that the medical community is unable to properly
communicate with patients seeking their input
* fear that a doctor is not knowledgeable of
or is not making available to the patient all of the
possible alternatives
* difficulty asking questions of a doctor when the patient
feels in awe of the doctor.
Several *reasons* why patients wanted information also emerged
from the replies:
1. To inform doctors about (possibly rare) medical conditions
or treatment options they, the doctors, are not familiar with.
2. To be able to communicate better with doctors about a
medical condition.
3. To be able to evaluate the medical care a patient is receiving.
4. To understand what to expect as a patient or family member of
a patient: how the condition affects the patient's life, what a
particular treatment entails, and so on.
There are several academic studies I know of, by Ferguson
and Brennan, that have evaluated patient use of various
on-line resources. These studies report increased patient
skills in caring for themselves medically, increased
confidence to control the decisions that affect their
health and well-being, and increased confidence to
talk with health professionals about their medical problem.
Some background to my enquiry: I was recently involved
in a project on patient access to on-line breast-cancer
information while I was a Senior Research Scientist at
the Stanford University School of Medicine. (A write-up
of our project has just appeared in the IEEE journal
"Intelligent Systems," in a special issue on Artifical
Intelligence and Medicine.) I am now involved in
follow-up commercial work on patient access to information.
What I am concerned about is making on-line
medical resources available to *all* patients, not
just those who have ready access to a computer and
the Internet. There are key technologies that can give
this access - speech recognition over the telephone
coupled with interactive databases (possibly
linked to existing Web sites). This technology
is now widely used for other purposes, notable for
stock quotes and trading. I'd like to see it
harnessed for patients.
So thank you once again for your generous response to
my enquiry. I'd be happy to hear any further responses
to this.
Colleen Crangle
Colleen E. Crangle
crangle@converspeech.com
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