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[Hardin MD]

Hardin MD Notes, Feb 1, 2000
Consumers ("Patients") as organizers of Internet health sources

Eric Rumsey

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
  • 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 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.


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