many years, such as diabetes, arthritis, infertility, and chronic A useful feature of this site is a section on software for diabetes management. …
Family Practice Management draft
Nov 15, 1999
Eric Rumsey eric-rumsey@uiowaedu
Patients as organizers of Internet health sources
Body of article followed by sidebar
One of the most interesting aspects of working on the Hardin Meta Directory
has been discovering that many excellent directory sites are done by
patients A particularly difficult aspect of authoring a directory site, or
link-list, is maintaining its currency - 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 thats particularly well-suited to information-
seeking patients, who have a serious interest in keeping up with new
developments in their field Especially in the case of chronic diseases and
conditions, which last for many years, such as diabetes, arthritis,
infertility, and chronic hepatitis see examples below, well-informed
patients often develop a wide network of communication and a deep knowledge
of information sources that are available in the electronic world Family
physicians can benefit greatly from taking advantage of the painstaking
effort that patients are putting into these directory sites
All of the sites below
have been given the Hardin MD Clean Bill of Health
award wwwlibuiowaedu/hardin/md/cbhhtml, 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
wwwmendosacom/faqhtm, 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 Wisss 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 - wwwpanixcom/donwiss/
Candida - wwwpanixcom/candida/
No Milk - wwwpanixcom/nomilk/
Irritable Bowel Syndrome - wwwpanixcom/ibs/
Paleolithic Diet - wwwpanixcom/paleodiet/
Alternatively, these links are also available on the Hardin Meta Directory
Nutrition page -
wwwlibuiowaedu/hardin/md/nutrhtml
Aboutcom 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
infertilityaboutcom/library/blcommunhtm at the infertility site
Interestingly, some guides for Aboutcom health sites are patients and some
are health professionals Carol Eustice, the guide for the arthritis site
Net Links at arthritisaboutcom/mlibraryhtm, 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 Net Links at infertilityaboutcom/mlibraryhtm,
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
wwwcansearchorg/canserch/canserchhtm 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 its presented in narrative format, with links
embedded in paragraphs of text, instead of in list format
The Melanoma Patients Information Page Research Library
wwwmpiporg/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 Reiters Information Support Group Link Library
wwwrisgorg/research/risglk/risglkhtm 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
Internet Resources for Special Children Disability Links
wwwirscorg/disabilityhtm 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
Ciamarras 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 hometexomanet/moreland/linkshtml devoted to external sites
Moreland was diagnosed with hepatitis C in 1992, probably contracted from
blood transfusions during the birth of her children
Sidebar
In looking for information on the web, there are two basic approaches -
Search engines and directory sites Search engines such as Alta Vista work
well when youre looking for a specific bit of information But they dont
work well for broad searches - In Alta Vista, for example, searching for
heart gives over 7 million links and searching for cancer gives over 3
1/2 million links For
broad subject searching, directories work much
better Directory sites are created by individuals, often originating from
personal bookmark lists, which is in fact the origin of Yahoo, the
prototypical directory site Directory sites make it relatively easy to
browse the resources in a subject, to see at a glance what sorts of
resources are available in the subject
The Hardin Meta Directory of Internet Health Sources has been developed at
the University of Iowa to provide access to the best directory sites in 38
specialties in health and medicine The directory sites listed in the
Hardin Meta Directory are developed and maintained by a wide variety of
people, including physicians, librarians, nurses, and patients The sites
are ranked on the basis of their comprehensiveness, with the largest being
at the top of the page A particularly valuable feature of the Hardin Meta
Directory is that directory lists that it includes are evaluated by the
connection rate of their links - A commonly-encountered problem on the
Internet is dead links; this time-wasting annoyance is minimized on the
lists in the Hardin Meta Directory - Lists are checked regularly to make
sure that they meet quality
standards for link-connection rate Lists that
have at least a 93 connection rate are given the Hardin Meta Directory
Clean Bill of Health award
Mdf229/FPMarticledoc
