The First International Conference on Cancer on the Internet was held in New York, June 19-20, 2003.
The participants (medical doctors - including oncologists, nurses, psychologists, health researchers, healthcare administrators, government officials, information technologists, cancer patients and advocates, social workers, journalists etc.) came from 13 different countries to discuss the use of the Internet as a tool for health.
The following information was elicited via the presentations and discussions:
1. It is estimated that currently one third of all cancer patients or their relatives world-wide go online at some time to obtain information on the disease and its treatment, to seek support from on-line communities and to communicate with their professional carers and loved ones.
The Internet is a particularly important source of information and support for people with rare cancers and has proven to be an accessible and affordable source of information on cancer.
The utilization rate of on-line health information resources will undoubtedly grow as access to electronic information resources rapidly expands around the globe.
2. The consumer is faced with the problem of how to select accurate and reliable sources of information (websites) and avoid inaccurate, misleading information sources.
Cancer websites, that conform to quality guidelines and contain evidenced-based information, should receive the encouragement and the support of cancer institutes, charities, governments, patients and professional organisations.
Moreover, efforts should be made to flag poor quality sites to cancer patients.
3. There are numerous barriers to e-access however the most important are language, culture and health/computer literacy.
There is evidence that health and computer literacy barriers can be overcome if people are given sufficient support, guidance and computer access. In contrast language barriers are very difficult to overcome and therefore research in technology of translation and automatic transformation of texts deserves encouragement and support.
However, care is required since translated materials are not necessarily culturally sensitive.
4. The Internet has helped and is helping cancer research in many different ways (free and fast circulation of data and information, access to electronic libraries, mathematical models for individual risk assessment, opportunities for collaboration etc.).
The benefits are being rapidly extended to many countries of the emerging world.
5. The Internet has also helped facilitate clinical practice by promoting multidisciplinary consultation, dissemination of information about the latest treatment strategies, and increased access and interaction between cancer care providers and consumers.
As Internet health information use is associated with greater social support, it may be useful to let patients know about the potential psychosocial benefits they can receive by using the Internet.
6. Considerable effort and resources are currently being poured into overcoming e-access barriers and improving the quality of information provided on the Internet; however, there is much duplication of efforts that could be avoided through international collaboration and sharing of best practice.
With the support of the American-Italian Cancer Foundation and of McGraw Hill, the Second International Conference will be held again in New York, September 13-14, 2004
This conference offered an opportunity for advocates to speak on an equal footing with healthcare professionals from many countries. Research was presented and many questions asked. It was an opportune time for dialogue.
Was this the result of the European influence? Or the fact that this was the first ever conference on this issue?
Regardless, it was an excellent event and there will be a follow-up meeting next year (September 2004).
Below is the information we handed out at this event:
About us and our experiences on the Net:
* We saw the need for information from the patient perspective. Studies in the U.S. and elsewhere continually show a strong (over 60% of people with cancer) interest in complementary, alternative (CAM) therapies.
* Organization founded 1997
* Website up June 26, 1999 www.annieappleseedproject.org
* No advertising: links to other cancer organizations, women's groups and word of mouth, as well as handouts at many events and meetings.
* Most popular pages included our Home page, Breast Cancer Issues, Who We Are, Studies, SEARCH, Treatment: Consumers' View, Ovarian & Gynecological, Cancer Clinics Worldwide, Clinical Trial, Food/Water/Books/Products, Links, For Healthcare Professionals, Herb-Drug Interactions, Meetings Summaries/Advocacy Issues, Environmental Issues, Flaxseeds/Oil, Coffee Enemas,
* Our reports are issued after meetings and are circulated to approximately 350 organizations and individuals.
* A small group of volunteers bring our materials to a variety of meetings
* From June 7, 2002 to June 6, 2003, 204,397 SEARCHES brought visitors to our site.
* Most popular SEARCH engines included google.com, yahoo.com, msn.com, aolsearch.aol.com
* International visitors found us through google.ca, google.co.uk, google.com.au,google.de, google.it google.co.nz, google.com.sg, ask.co.uk, google.ie,google.co.jp, google.com.br, google.co.th, google.be, google.ch,google.co.kr
* Many people write to us with questions and comments. All receive responses.
|Remember we are NOT Doctors and have NO medical training.|
This site is like an Encyclopedia - there are many pages, many links on many topics.
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