"We list the
best
sites that list the sites"
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Hardin MD Notes,
Feb 1, 2000
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Consumers ("Patients") as organizers of Internet health sources
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Eric Rumsey
eric-rumsey@uiowa.edu
The Internet is rapidly bridging the gap between information
that's designed to be used by health professionals and information
that's designed to be used by consumers - Many consumers are eager to
have access to all information relating to their health situation,
and many of them are quite capable of understanding it. An outgrowth
of this development is that consumers are not only intensely involved
in seeking out health information sources; they are also taking an
active role in developing and organizing Internet sources. As proof
of this, we list below several examples of high-quality directory
sites that are managed by patients (or family members), from the
Hardin Meta Directory
of Internet Health Sources.
The purpose of the Hardin Meta Directory is to provide access to
the best directory sites in 38 specialties in health/medicine. These
sites are developed and maintained by a wide variety of people,
including physicians, librarians, nurses, and patients. In judging
the quality of
directory sites such as those included in the Hardin Meta
Directory, the overriding feature considered is the currency of the
site, as reflected in the site maintenance. Keeping up with new sites
in the field and checking existing links to make sure they are
connecting is a time-consuming job, and one that's particularly
well-suited to information-seeking patients, who have an acute
interest in keeping up with new developments in their field.
All of the sites below have been given the Hardin
MD Clean Bill of Health award, based on their superlative
connection rates. Most of them have been listed in the Hardin Meta
Directory for at least a year, some of them since it originated in
1996.
- Rick Mendosa, the developer of On-line
Diabetes Resources, is a professional writer who has been
diagnosed with diabetes. His background as a writer shines through
in his excellent annotations of the sites listed. A useful feature
of this site is a section on software for diabetes
management.
- Don Wiss, who has lived with celiac disease all his life, has
developed a superb set of link pages on nutrition and diet. Wiss's
informative annotations show his thorough familiarity with the
"net community" of people with similar diagnoses. By profession
Wiss is a computer programmer. These pages are not listed
altogether anywhere, so here they are:
Gluten-Free |
Candida | No
Milk | Irritable Bowel
Syndrome | Paleolithic
Diet
Alternatively, these links are also available on the Hardin
Meta Directory Nutrition
page
- About.com is an innovative company with sites on a wide
variety of subjects, which are developed and maintained by
independent subject specialists ("guides"). In addition to
maintaining extensive lists of Net Links, the guides also work to
facillitate communication by hosting live chats, managing forum
discussions, and publishing newsletters; for details see the page
on community
building at the infertility site. Interestingly, some guides
for About.com health sites are patients and some are health
professionals. Carol Eustice, the guide for the arthritis
site, is both - She is trained as a biologist and worked in a
hospital laboratory for 16 years until her disability put a
premature end to her career. Tracy Morris, the guide for the
infertility site,
gains her background from the patient side, through personal
experience with infertility; by profession she is a social
worker.
- CANSEARCH,
the Online Guide to Cancer Resources was originated in 1994 by
cancer survivor Marshall Kragen, who died recently of a heart
ailment. It is now carried on by the National Coalition for Cancer
Survivorship, a grassroots network of patients, health
professionals and organizations working on behalf of people with
cancer. The Online Guide reads more smoothly than most directory
sites because it's presented in narrative format, with links
embedded in paragraphs of text, instead of in list format.
- The Melanoma Patients'
Information Page Research Library was started as a page of
personal bookmarks, by Jeff Patterson, when his sister-in-law was
diagnosed with melanoma in 1995, and he wanted to share web
information with family and friends. Word spread of its
usefulness, and it has grown into a large site, which is partially
supported by the Melanoma Research Foundation, a nonprofit
organization founded by melanoma patients and survivors.
- The Reiter's
Information & Support Group Link Library is part of a
larger support group site, which also includes a patient-oriented
listserv, RISG Online. The Link Library covers
spondyloarthropathies and other rheumatic diseases and related
conditions, and is maintained by Stephanie Meakin; the support
group site is maintained by Rick Hahn. They both have one or more
of the spondyloarthropathies. Hahn is a truck driver and Meakin is
an administrative assistant. (3.14.00. Meakin is no longer associated with this site; the Link Library is now maintained by volunteers from the support group.)
- Internet
Resources for Special Children Disability Links was developed
by Julio Ciamarra when his son was born with multiple
disabilities, and he found that information on children with
disabilities was difficult to find. Ciamarra's profession is
working with Internet technology.
- As in many patient-developed sites the Hepatitis
C Resource, developed by Elaine Moreland, has mainly original
material, with one section, Related webpages devoted to external
sites. Moreland was diagnosed with hepatitis C in 1992, probably
contracted from blood transfusions during the birth of her
children.
Hardin
Library for the Health Sciences, University of Iowa
Please send comments to hardin-webmaster@uiowa.edu
The URL for this page is
http://hardinmd.lib.uiowa.edu/consumer.html
Last updated Thursday, Dec 02, 2010
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