Nada Trzan-Herman and Anuska Sencar, Lek Pharmaceutical and Chemical Company d.d. - Special Library, Slovenia

Sites-Toile pour les maladies à haute incidence:

Résumé: Une société moderne est de plus en plus concernée par les questions de santé. Les utilisateurs d'Internet à travers le monde entier ont la possibilité de s'informer sur les maladies et sur leurs traitements les plus appropriés. Internet représente un outil d'enseignement utile pour les médecins, les pharmaciens, les patients et toute personne ayant besoin de l'information la plus récente sur la manière de traiter différentes maladies dans la vie quotidienne. L'industrie pharmaceutique est un des agents fournisseurs d'information pertinente sur les questions de santé pour le public. Cette contribution présente des sites de la Toile pour des maladies à haute incidence. Le rôle d'une telle information contribue à améliorer les conditions de santé pour la société.

Abstract: As modern society becomes more and more health conscious. Internet users around the world havethe opportunity to learn about diseases and about the best practice for their management. The Internet offers a useful educational tool for doctors, pharmacists, patients and all consumers who need the most up to date information about managing diseases in daily life. The pharmaceutical industry is one of the providers of reliable health information for the public. This paper presents web sites for high incidence diseases and the purpose of such information to achieve better health for society.

PREFACE

We concentrated our internet searches on those sites which give reliable information about high incidence diseases. As a starting point we chose a WHO report and performed a simple search on these diseases. We believe that the Internet can be an important information source, but today there is still a limit on people who use it. Because of that other information sources are necessary and maybe they are also necessary in an information overloaded society - because people simply do not read. We try to group a number of internet sites for each disease in three categories. As a result we wish to see which diseases are most, and which are least, discussed on the Internet.

1. WORLD HEALTH REPORT 1997 FOR HIGH INCIDENCE AND LEADING KILLER DISEASES

The WHO report shows that at present there are ten leading diseases which cause people's suffering and disability. They are the following:

Coronary heart disease* (7.2 million deaths per year)

Cancer* - all sites (6.3 million deaths per year)

Cerebrovascular disease* (4.6 million deaths per year)

Acute lower respiratory infection (3.9 million deaths per year)

Tuberculosis (3.0 million deaths per year)

Chronic obstructive pulmonary disease* (2.9 million deaths per year)

Diarrhoea - including dysentery: 2.5 million deaths per year

Malaria (2.1 million deaths per year)

HIV/AIDS (1.5 million deaths per year)

Hepatitis B (1.2 million deaths per year)

*= non-communicable diseases

WHO is calling for an "intensified and sustained" global campaign to encourage healthy lifestyles and attack the main risk factors which are responsible for many diseases - unhealthy diet, inadequate physical activity, smoking and obesity. Such a campaign requires top-level international collaboration and co-operation, involving governmental institutions, health authorities, the community, mass media, non-governmental organisations, medical and voluntary organisations and the private sector. Heart diseases, stroke, diabetes and cancer (non-communicable diseases) will occur more and more in developing countries and in industrialised countries, too.

There is an urgent need to raise awareness of and motivation for healthy lifestyles. In the battle for health in the 21st century, infectious diseases and chronic diseases are twin enemies that have to be fought simultaneously on a global scale. Health information on the Internet is an important tool for empowerment patients. Through the Internet people and patients who are potential or ultimate consumers of healthcare can learn how to preserve their health. Patients should not be a passive partner in a healthcare system. They have to be well informed; they have to be aware that there is information in various forms (also on the Internet) and they have their own responsibility for healthy living. If a disease exists there are many ways for people to personally find proper information about how to cure the disease.

We would like to suggest some Internet health care sites which are devoted to educate people to achieve a healthy life style and help to prevent non-communicable diseases (e.g.: http://www.healthgate.com, http://www.virgin.net/health/, http://www.pslgroup.com/docguide.htm, http://www.ntl.sympatico.ca/healthyway, http://www.nthames-health.tpmde.ac.uk/ntrl/hifirst/health_topics/index.htm.. .) and to prevent communicable diseases (e.g.: http://www.cdc.gov/travel/travel.html ,  http://www.who.ch/ctd/). We can add that HIV/AIDS is covered extremely well in all sites which deal with health care and prevention.

2. OUR METHOD TO FIND THE INTERNET SITES FOR THE TEN LEADING KILLER DISEASES

We have performed searches via the search engines Yahoo, Alta Vista and Lycos and have found out that searching Yahoo/Alta Vista gave the best results. We put in simple words to search, like patients would do:

heart cardio

cancer

vascular, diabetes, obesity (most vascular diseases are caused by diabetes and obesity)

respiratory infection pneumonia

tuberculosis

emphysema, asthma (allergy)

diarrhoea, diarrhoea dysentery

malaria

hiv aids

hepatitis b

As you all know there are differences in search engines and we combined results. When there was a huge amount of Internet sites (like for heart, asthma etc) we suggest only the most reviewed and comprehensive ones. We try to suggest the addresses which are well sponsored by government institutions, health authorities or the pharmaceutical industry and which are created by scientific bodies. We have to add that alternative medicine is also included in these sites.

We try to evaluate the amount of reliable information for the public, or patients, which is available on the Internet for these ten diseases.

We sorted our findings into three categories:

more than 100 specific Internet sites: large

from about 10 to 100 specific Internet sites: medium

and about 10 specific Internet sites: small

3. INTERNET SEARCHING ON HIGH INCIDENCE DISEASES CORONARY HEART DISEASE

Heart diseases and stroke are the leading causes of death in richer nations and they will occur more and more in poorer ones, too. Many Internet sites are devoted to heart diseases and prevention of them - mostly with a healthy life style. Research institutes and professional organisations as well as the pharmaceutical industry create or sponsor interesting sites for the education of patients; here are some suggested addresses:

http://www.amhrt.org American Heart Association U.S.A.

http://www.heartinfo.org/ Heart Information Network, U.S.A.

http://www.area.trieste.it/cor/ Cardiovascular Communication Centre, Trieste , Italy

http://www.hearthome.com/ (also radio show) Heart Homepage, U.S.A.

http://www.cardio.com/articles.html Cardiovascular Institute of the South, U.S.A.

http://www.infinityheart.com/ Infinity Heart Institute, U.S.A.

http://www.all-florida.com/pas/savehert.htm University of Michigan, U.S.A.

http://www.fi.edu/biosci/ The Franklin Institute of Science Museum

http://www.tmc.edu/thi/ Texas Heart Institute, U.S.A.

CANCER

In our opinion there are many more Internet sites for "cancer" than for heart diseases. There are many sites for each specific cancer (brain tumour, breast cancer, colon cancer, gyneacological cancer, Hodkin's disease, laryngeal cancer, leukemia, lung cancer, lymphoma, melanoma, neuroblastoma, oral cancer, ovarian cancer, prostate cancer, skin cancer, testicular cancer, throat cancer, thyroid cancer...). All these various sites are listed in Yahoo/Health: http://search.yahoo.com/health/Diseases  -and condition/cancer

These sites are also important for recruiting patients for cancer clinical trials, because various clinical trials are directly announced there. There are many reliable sites about cancer but we would suggest starting with the Yahoo site which brings together information for patients and scientists. It is hard to choose among so many specific and important sites and we try to list those which are oriented towards patients as much as possible:

http://www.nci.nih.gov/ National Cancer Institute

http://www.texascancercenter.com/resources.htm Texas Cancer Center

http://medweb.bham.ac.uk/cancerhelp/indexg.html

http://www.medinfo.org/ Oncology Resource

http://www.medinfo.org/nci/cancernet/ Cancernet Contents List

http://brain.mgh.harvard.edu/

http://oncolink.upenn.edu/

http://www.cancer.org/frames.html (American Cancer Society)

http://www.cancernews.com/quickload.htm Cancer News on the Net

CEREBROVASCULAR DISEASE

These diseases are mainly caused because of diabetes and obesity. We have found a lot of reliable sites which inform people with early diagnosis of diabetes and prevention of it. There are many sites with all sorts of information which can help patients (like cookbooks, diets, sports, life style etc). Information for children with diabetes and obesity is also very important.

http://www.cdc.gov/nccdphp/ddt/ddthome.htm

http://www.coloradohealthnet.org/site/idx_diabetes.html

http://www.diabeticus.com

http://www.geocities.com/Athens/Forum/5769/diabetes.html

http://www.diabcare.de/

http://www.diabetesmonitor.com/search.htm

http://www.tenbrooks11.lanminds.com/ (excellent)

http://www.lilly.com/diabetes/diabetes_education.html

http://www.roche-obesity.net/

http://www.yona.com/trimfit

http://www.nlm.nih.gov/index/medindex.html

http://www.weightloss2000.com

http://www.plsgroup.com

ACUTE LOWER RESPIRATORY INFECTION

These diseases are connected with lung infections and pneumonia. There are no specific sites about prevention and mainly there are descriptions of methods and medicines to cure lower respiratory infections (also herbal remedies are suggested): These sites are:

http://www.lungusa.org/ American Lung Association

http://www.healthy.net/clinic/dandc/respirat/ Health World Online

http://rehab.educ.ucalgary.ca/courses/core/301.03/Respiratory/pneumonia-overview.html Univ.of Calgary

http://www.ichs.org

http://www.ntl.sympatico.ca/contents/health/

TUBERCULOSIS

There are many good sites about the education and prevention of tuberculosis - many more than on the previously listed disease (acute lower respiratory infection). WHO and Center of Disease Control and prevention (CDC), Atlanta have the most important role in this area. We can see that institutions all over the world care a lot about preventing the revival of tuberculosis. There are the following important sites:

http://www.lungusa.org American Lung Association http://www.who.ch/gtb/ WHO

http://www.cdc.gov/nchstp/tb/   National Center for HIV,STD&TB prevention, U.S.A.

http://www.nationaltbcenter.edu/home.html   National TB Center U.S.A.

http://tbindia.info.nih.gov/ India's National Database on TB

CHRONIC OBSTRUCTIVE PULMONARY DISEASES

These diseases include mostly pulmonary emphysema and asthma and a lot are connected with allergy. There are, especially,many sites for asthma prevention and treatment. They are well presented for the public (adults and children) and for professionals. They are sponsored a lot by the pharmaceutical industry. With careful reading of these sites people can learn how to identify reasons for the increased prevalence of asthma and try to protect themselves. These are some suggested sites:

http://www.mdnet.de/asthma/gina/index.html (also in French, Italian, Spanish, Portuguese, German)

http://www.asthmacontrol.com/tkcntrl.html

http://www.lungusa.org/  American Lung Association

http://www.pslgroup.com/

http://www.es.unc.edu/~kupstas/faq.html

http://fbhc.org/patients/betterhealth/asthma/home.html

http://www.aafa.org/

http://www.healthtouch.com/ (a part)

http://hsp.virginia.edu/cms/tutorials/asthma/asthma1.html

DIARRHOEA

Diarrhoea is an infectious disease, spread all over the world, which causes serious consequences especially in developing countries where living conditions are much less healthy. Because of low Internet usage in those countries we cannot expect many Internet sites giving information about this disease and its prevention. Much more frequent and comprehensive are instructions about how to alleviate and cure diarrhoea when it appears in well developed countries (children, travellers, HIV infections). These Internet sites vary from professional ones to really simple ones (e.g.: first-aid, curing advises:

http://www.babydirectory.com/doctor/vomit.htm, produced by Cuinex Interactive Ltd, UK)

The suggested sites are:

http://www.bdf.org.uk/leaflets/diarrhoe.html British Soc. of Gastroent. & Br.Digestive Found.

http://www.nzhealth.co.nz/everybody/docsd_h/diarrh.htm Online Publ., New Zeland

http://www.dotpharmacy.co.uk/updiar.html Dot Pharmacy, UK

http://www.who.int/chd/publications/cdd/meded/medpref.htm WHO

http://www.drugbase.co.za/data/med_info/diarhoea.htm Med.inf.Zambia (sponsored by pharm.ind.)

MALARIA

We have found some important sites for the public created by WHO, Medical Control Agency and British airways and Centers for Disease Control and Prevention - CDC, Atlanta. There are many Internet sites which are research oriented and as such they are not popular for education and prevention. But it is important to mention that a Plasmodium falciparum genome sequencing project is going on and that we can expect new ways of treatment of this disease. For the public we would recommend the following sites:

http://www.who.int/ctd/

http://www.malaria.org/

http://www.travelclinic.co.za/ (British airways)

http://www.open.gov.uk/mca.htm (MCA)

http://www.cdc.gov/travel/travel.html (CDC)

http://www.malaria.org.za/

http://www.liv.ac.uk/lstm/malsat.html

HIV/AIDS

We have many important addresses for AIDS/HIV - general information, prevention and treatment. Many of these sites are sponsored by the pharmaceutical industry. In our opinion one of the best sites for HIV/AIDS information is created by Hoffmann la Roche. We tried to search HIV/AIDS in combination with "South Africa" where this disease is an endemic disease but the result was poor. We have found only one good prepared site which was created in Zambia.

The efforts of society to prevent HIV/AIDS via Internet are huge but there is a problem about how to reach people in less developed countries. There are so many sites on the internet but we would suggest the following:

http://www.cdc.gov/nchstp/hiv_aids/dhap.htm

http://www.aegis.com/

http://hivinsite.ucsf.edu/ (also in French and Spanish language)

http://www.roche-hiv.com/

http://aids.miningco.com/

http://www.thebody.com/index.shtml

http://www.ama-assn.org/special/hiv/hivhome.htm

http://www.hiv.net/ (also in German language)

http://www.projinf.org/

http://www.hivatis.org/

http://www.hivnet.ubc.ca/ctn.html

http://www.hivnet.de/ (also in German language)

http://chid.nih.gov/

http://www.immunet.org/immunet/home.nsf/page/homepage

http://www.catie.ca/network.html (also in French)

HEPATITIS B

There are some excellent sites for the public (patients) to learn about hepatitis B. Some of them are devoted only to hepatitis B and others can be found as a part of sites which correspond to liver diseases and hepatitis. They are well presented for patient education and communication. It is important to inform people about vaccination and that people can receive information in their own language, too (not only in English language). There are several local sites (especially in USA) which are concerned about patients with hepatitis B in its surroundings, but in our opinion there are the following specialised sites for hepatitis B:

http://www.globalserve.net/~harlequin/HBV/

http://www.gastro.com/liverpg/hepbvac.htm

http://www.hepnet.com/ Hepatitis Information Network

http://www.cdc.gov/ncidod/diseases/hepatitis/ CDC, Hepatitis Branch, U.S.A.

http://www.immunize.org/ Immunisation Action Coalition & Hepatitis B Coalition

4. OUR OPINION

Referring to our Internet search results which are presented in section three, we can make the following remarks on the number of reliable Internet sites:

DISEASES          MILLION DEATHS PER YEAR    NUMER OF SITES
Coronary heart diseases        7.2                LARGE
Cancer - all sites             6.3                LARGE
Cerebrovascular diseases       4.6                LARGE
Acute lower resp. infections   3.9                SMALL
Tuberculosis                   3.0                MEDIUM
Chronic obstructive pulm. dis. 2.9                LARGE
Diarrhoea                      2.5                SMALL
Malaria                        2.1                SMALL
HIV/AIDS                       1.5                LARGE
Hepatitis B                    1.2                MEDIUM

In our opinion there could be more sites for Hepatitis B which causes 1.2 million deaths per year and for acute lower respiratory infections, which cause 3,9 million deaths per year as these two diseases occur a lot in well developed countries where the Internet is popular.

5. CONCLUSION

It is perfectly clear that there are many Internet sites for diseases which prevail in well developed countries - like coronary heart diseases, cancer, cerebrovascular diseases etc. because the Internet in these countries is popular. It is wise to use a medium which is the best for a mass of people, and the Internet is the right one in these countries. The only surprise seems to be Hepatitis B and Acute lower respiratory infections which also appear a lot in well developed countries but there is not so many reliable Internet sites for the public.

We have to conclude that there are huge efforts by health authorities, government institutions, the pharmaceutical industry, research organisations and universities to educate people via the Internet about high incidence diseases and about their prevention. We can assume that one third of the above cited Internet sites for the ten leading diseases which cause death are sponsored by the pharmaceutical industry.

back to TOC EAHIL Newsletter 47; May 1999