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Diabetes and The Internet Finding Resources You and Your Health Care Team Can Trust October 2005 Jeff Hitchcock Children with Diabetes
Agenda Topics for Today’s Discussion • Internet Content – Determining quality is a challenge – Web sites, Mailing lists, Newsgroups, Other Services – Privacy and Security Concerns • Searching for Answers – Web sites, Search engines, Pub. Med • Vetting the Good from the Not So Good remains a challenge • Security issues www. childrenwithdiabetes. com While people often think that the Internet and the World Wide Web are the same, there is more on the Internet than just web sites. Diabetes information and support can be found throughout the Internet.
Determining Quality varies greatly throughout the Internet • Thousands of web sites about diabetes – Few are supported by medical professionals – Most are not kept up to date – Some are marketing dubious products • Look for trusted sources (HONcode) – Check credentials (look for an “About” page and read it carefully) – Look for sponsorships that might cause bias • Be skeptical – Just because it’s on the Internet doesn’t mean it’s true – If it seems too good to be true, it probably is • Ask yourself, “Why does this site exist? ” • When in doubt, ask your Diabetes Team www. childrenwithdiabetes. com Quality and accuracy do not always go hand in hand. There are many well done web sites hawking vitamins, minerals, even fruits, as a cure for diabetes. There also modest sites that have excellent content.
Web Sites Good starting points on the World Wide Web When you seek information on the Internet, start with names you know and trust. Searching for “diabetes” on Google yields 88 million results. – Children with Diabetes (www. childrenwithdiabetes. com) – NIDDK (www. niddk. nih. gov) – American Diabetes Association (www. diabetes. org) – Juvenile Diabetes Research Foundation (www. jdrf. org) – Canadian Diabetes Association (www. diabetes. ca) – David Mendosa’s Diabetes Directory (www. mendosa. com/diabetes. htm) www. childrenwithdiabetes. com • Major diabetes web sites
Web Sites Many companies have excellent web sites Company websites are a great place to learn about the latest diabetes products. Some sites include virtual models of their products, such as glucose meters and insulin pumps. Many offer products manuals online in PDF format in case you’ve lost yours. Corporate web sites have become excellent patient education and marketing tools. Examples: – Meter Companies • Abbott Diabetes Care (www. abbottdiabetescare. com) • Life. Scan (www. lifescan. com) • Accu-Chek (www. accu-chek. com) – Pump Companies • Animas (www. animascorp. com) • Smiths Medical Deltec (www. delteccozmo. com) • Medtronic Mini. Med (www. minimed. com) – Insulin Companies • Novo Nordisk (www. kwwd. com) • Aventis (www. lantus. com) • Lilly (www. lillydiabetes. com) www. childrenwithdiabetes. com •
Web Sites Many clinics have excellent web sites – Barbara Davis Center for Childhood Diabetes (www. barbaradaviscenter. org) – Diabetes Research Institute (www. diabetesresearch. org) – Joslin (www. joslin. org) www. childrenwithdiabetes. com Some clinic sites help you understand the science behind diabetes research and the best in today’s clinical practice guidelines. Learn about islet cell transplantation at the DRI web site, for example. • Many clinics have established web sites to provide information and reach out to their patients
Web Sites The US Government offers several excellent web sites The National Library of Medicine (Pub. Med) offers a gateway into peer-reviewed scientific studies. – NIDDK (www. niddk. nih. gov) • General diabetes information • Everything is free for use – FDA (www. fda. gov/diabetes) • Regulatory information about drugs and devices • Report adverse events online – Pub. Med (www. ncbi. nlm. nih. gov/entrez/query. fcgi) • Search millions of journal articles • Keep up to date • Verify claims of “miracle cures” www. childrenwithdiabetes. com All information on US Government web sites is in the public domain and can be copied or used as needed without requiring permission. • There are many government run web sites with diabetes information, including
Web Sites Diabetes is well represented on the Web • Other diabetes web sites – Insulin Pumpers (www. insulin-pumpers. org) • Everything about pumping insulin – On-line Diabetes Resources (www. mendosa. com/faq. htm) • Vast collection of links to web sites • Original articles, focus on type 2 – Islet Foundation (www. islet. org) • Focus is on promoting xenotransplantation www. childrenwithdiabetes. com On-line Diabetes Resources, run by David Mendosa, is an excellent collection of links to diabetes content throughout the Internet. David has published his diabetes information since early 1995, making him an online diabetes pioneer.
CWD has over 25, 000 pages of content, all searchable and indexed. Its chat rooms are always busy, and the parents mailing list is among the most active. Yahoo ranks CWD as the most popular diabetes web site. www. childrenwithdiabetes. com Children with Diabetes – www. childrenwithdiabetes. com
What’s CWD? CWD’s focus is on type 1 diabetes in kids. In addition to the web site, CWD holds three annual conferences, including a very large “Friends for Life” summer conference in Orlando. • • • One of the largest diabetes websites in the world Independent, trusted Over 25, 000 pages of authoritative information Millions of hits per month Almost 15, 000 visitors per day Chat room, polls, personal stories, “Ask the Diabetes Team”, and much more Family Support Network Weekly “What’s New” email newsletter Visitor’s privacy paramount Subscribes to the HONcode principles for health web sites www. childrenwithdiabetes. com CWD is a great example of an online community
D 123 includes the same content as CWD, but with an age-neutral web site address. Share it with adults or parents who have diabetes. www. childrenwithdiabetes. com Diabetes 123 – www. diabetes 123. com
The ADA web site offers information about diabetes news reports, and ways to get involved with the ADA. www. childrenwithdiabetes. com ADA – www. diabetes. org
The ADA also publishes Diabetes and Diabetes Care, two of the most important scientific journals in the diabetes field. Abstracts are free, but full text requires a subscription to the journal or payment of a fee. www. childrenwithdiabetes. com ADA Journals – www. diabetesjournals. org
The JDRF web site reports on JDRF funded research and offers ways to support JDRF. www. childrenwithdiabetes. com JDRF – www. jdrf. org
The Canadian Diabetes Association web site offers diabetes information in English, French and Chinese. www. childrenwithdiabetes. com CDA – www. diabetes. ca
David Mendosa has been compiling diabetes links on the Internet since February 1995. His list of links is the most extensive. David has type 2 diabetes himself. www. childrenwithdiabetes. com On-line Diabetes Resources – www. mendosa. com/diabetes. htm
The Diabetes Research Institute web site offers an inside look at the science behind islet cell transplants. DRI doctors and scientists are at the forefront of curerelated research. www. childrenwithdiabetes. com DRI – www. diabetesresearch. org
The Barbara Davis Center web site offers the complete text to Dr. Chase’s “Understanding Insulin Dependent Diabetes, ” also known as the Pink Panther book. www. childrenwithdiabetes. com Barbara Davis Center – www. barbaradaviscenter. org
The Joslin web site offers lots of information and some simple, interactive online courses about diabetes. www. childrenwithdiabetes. com Joslin Diabetes Center – www. joslin. org
The NIDDK web site offers a vast collection of information about diabetes, some of it in Spanish. All information on the NIDDK web site is free and not copyrighted and can be used anyway you want. www. childrenwithdiabetes. com NIDDK – www. niddk. nih. gov
Learn about insulin pump therapy from Animas using the virtual insulin pumps. Animas is a financial supporter of CWD. www. childrenwithdiabetes. com Animas – www. animascorp. com
Smiths Medical Deltec – www. delteccozmo. com The first two Cozmo users in the US were kids associated with CWD. Smiths Medical is a financial supporter of CWD. www. childrenwithdiabetes. com Smiths Medical Deltec makes the Cozmo insulin pump.
Medtronic Mini. Med’s web site offers information about insulin pumps and answers questions about pump therapy. Mini. Med has a great web site called Pump Expeditions, which offers a game to help kids learn about pump therapy. Medtronic Mini. Med is a financial supporter of CWD. www. childrenwithdiabetes. com Medtronic Mini. Med – www. minimed. com
Insulin Pumpers focuses on pump therapy and has an extremely active mailing list. If you pump or want to learn more, this is a great resource. www. childrenwithdiabetes. com Insulin Pumpers – www. insulin-pumpers. org
The Abbott Diabetes Care web site has information about their blood glucose meters. Abbott Diabetes Care is a major financial supporter of CWD. www. childrenwithdiabetes. com Abbott Diabetes Care – www. abbottdiabetescare. com
Life. Scan offers information about One. Touch products and great nutrition information. Life. Scan is a major financial supporter of CWD. www. childrenwithdiabetes. com Life. Scan – www. lifescan. com
BD’s diabetes web site has both patients care information and product information. www. childrenwithdiabetes. com BD – www. bddiabetes. com
Novo’s Keeping Well With Diabetes web site offers great diabetes education and tools for adults with type 2 diabetes. Novo Nordisk is a major financial supporter of CWD. www. childrenwithdiabetes. com Novo Nordisk – www. kwwd. com
Lilly’s diabetes web site has information about the company’s insulin products. www. childrenwithdiabetes. com Lilly – www. lillydiabetes. com
Insulin-Free World – www. insulin-free. org www. childrenwithdiabetes. com Insulin-Free World has gone off the air.
Mailing Lists Some mailing lists generate a lot of mail. The parents mailing list at Children with Diabetes often generates 200 or more messages per day. Online archives help people keep upto-date. • E-mail based discussions and support • Many dozens of mailing lists on various diabetesrelated topics • Children with Diabetes offers 14 mailing lists, including a very active Parents support list • Global reach using little bandwidth • A good directory of mailing lists is at http: //www. mendosa. com/faq. htm#E-Mail • Many mailing lists have web-based archives • Excellent for people with very low speed connection to the Internet www. childrenwithdiabetes. com E-mail reaches more people than the World Wide Web
Newsgroups Usenet is home to tens of thousands of discussion boards – alt. support. diabetes • Focus on adults and adult issues (mostly Type 2) – misc. health. diabetes • Focus on adults and adult issues (Type 1 and Type 2) • • Always read the FAQ (www. faqs. org) Be wary of disguised commercial posts The alt hierarchy is sometimes not available Families should be very careful about permitting unrestricted Usenet access due to easy access to vast amounts of objectionable content www. childrenwithdiabetes. com Before the World Wide Web, Usenet was responsible for a large percentage of Internet traffic. Its importance has declined in recent years, due in large part to unwanted commercial postings in all newsgroups. • Usenet newsgroups offer threaded discussions • Two main diabetes groups:
misc. health. diabetes is a major Usenet location for diabetes support. www. childrenwithdiabetes. com misc. health. diabetes
Searching for Answers The Web is a great equalizer, offering the same information to everyone who has access to a computer. • The Web offers unparalleled access to information • Information rich web sites offer internal search capability • Search engines search across multiple web sites • Pub. Med houses journal abstracts from the National Library of Medicine www. childrenwithdiabetes. com The Web is a true global source of information
Searching Web Sites Search tools are readily available for Web Masters, and some of the best are free. • Content rich web sites often offer internal searches • Search results will be limited to that web site’s content • Dynamically generated content is usually only searchable this way – The Family Support Network at CWD can help you find a friend, babysitter, or family near your child off at college – The Schools database at CWD, which reports on blood testing policies at public schools in the US www. childrenwithdiabetes. com Search web sites for the information you want
Search results from “Novo. Log” at CWD finds lots of matches, listed in order of relevance. Search terms are highlighted in yellow to help you find what you’re looking for. www. childrenwithdiabetes. com CWD Search Results Example
Search Engines Beware of search engine bias, especially if you use your ISPs proprietary search tool. Google is a good place to start, though “diabetes” by itself is not helpful. • Search engines can help you find diabetes web sites • Search engine ratings vary, so results of searches vary • Recommended starting points: – Google (www. google. com) • Rankings based on how many other web sites link to the site that is indexed • 88 million hits for “diabetes” – Google Scholar (scholar. google. com) • Search scientific journals – Yahoo (www. yahoo. com) • An index, rather than a search engine www. childrenwithdiabetes. com Search engines index billions of web pages
How do you begin to make sense of 88 million search results in Google? The links on the right are paid ads, not necessarily content that best meets your search words. www. childrenwithdiabetes. com Search Engine Example – Google
Yahoo! is a directory, not a search engine. CWD is ranked as the most popular diabetes web site. www. childrenwithdiabetes. com Yahoo’s Diabetes Directory
Pub. Med is the gateway into MEDLINE, an archive of millions of scientific journal articles. www. childrenwithdiabetes. com Pub. Med – www. pubmed. gov
Searching Pub. Med If you want to read current science, Pub. Med is the place to start. • • Over 12 million MEDLINE citations Searchable by keyword, author, journal Abstracts of journal articles generally available Very few journals allow free access to full text articles • An understanding of statistics can help you read the abstracts • Online at www. pubmed. gov www. childrenwithdiabetes. com Pub. Med offers a window into the world of science
Search results in Pub. Med link to abstracts of articles. From there, many link to journal publishers’ web sites where consumers can pay to view a full-text document. www. childrenwithdiabetes. com Pub. Med Search Results
Assessing Web Sites Always consider the goal of the web site owner. Is it only there to sell you something, or is there productneutral content of value? • Data shows that a large majority of people use the Internet to search for health care information • Separating good from bad is essential for your health • Simple things to look for: – Clear ownership and contact information – CVs of content authors – Proper citations to trusted sources for medical claims – Lack of claims for miracle cures or untested treatments – High content-to-sales-pitch ratio • When in doubt, ask your Diabetes Team www. childrenwithdiabetes. com Separating the good from the not so good
Health on the Net Foundation HON, based in Switzerland, helps consumers find medical web sites that they can trust. • Health on the Net Foundation (www. hon. ch) • Offers 8 Principals for medical web sites • Goal is to ensure authority, confidentiality, appropriate attribution, justifiable claims, transparency of authorship and ownership, and honesty in advertising • Look for the HONcode logo, which links to the HON web site: www. childrenwithdiabetes. com Since 1996, HON has been vetting medical web sites
Web sites that follow the HONcode are noted at the HON web site. This example shows that CWD is in compliance and has been since HON’s founding in 1996. www. childrenwithdiabetes. com HON Link Example
Quack. Watch – www. quackwatch. org If something seems too good to be true, it probably is. Check out Quack. Watch. • While there are many excellent diabetes-related web sites … • … there are many that are not so excellent • Claims of miracle cures, toxic food additives and the like should be viewed with extreme skepticism • If there were a cure, your Diabetes Team would tell you • “How to Spot a Quacky Web Site” is a great place to start (www. quackwatch. org/01 Quackery. Related. Topics/quackweb. html) www. childrenwithdiabetes. com Quack. Watch is run by Stephen Barrett, M. D.
Quack. Watch offers a wealth of information about pseudo cures and bad medical advice on a great many topics. www. childrenwithdiabetes. com Quack. Watch
Privacy and Security Privacy and security go hand-in -hand are the foundation of safe use of the Internet. Parents can no longer trust their kids to keep the computer safe. • • How to use the Internet safely Privacy issues Computer security issues These are issues that cannot be ignored by anyone using the Internet • Most at risk are users of DSL and cable modems, but … • … even dial-up users are at risk www. childrenwithdiabetes. com The Internet is like the Wild West
Privacy Concerns Privacy will become a critical issue as Internet use increases – – Who owns the web site? What is done with web site access logs information? What is done with personal information? What is done with other information, such as chat room messages? • New HIPAA rules govern storage of personally identifiable medical data • Be especially careful of children’s use of the Internet www. childrenwithdiabetes. com Everything you do on the Internet can be tracked, recorded, analyzed, and used in ways you did not intend. Remember that as you surf the Web. • Medical information is sensitive information • Keep privacy in mind whenever you can • Look for privacy policies on web sites
Privacy in General There are ways to maximize your privacy – Use that e-mail address for anything public, especially posting to Usenet – You can always delete it and start over – NEVER reply to spam – NEVER buy anything advertised in spam • • • Create a “screen name” for yourself Supervise children while they use the Internet Place the home computer out in the open Be careful giving out personal information Don’t disclose what you don’t want to You can always make it up www. childrenwithdiabetes. com Unsolicited commercial e-mail, called spam, has become one of the most serious problems facing the Internet. Data indicates that up to 80% of all e-mail is spam. Some spam verifies your address without your response – so called “web bots. ” • Get an e-mail address at a free service such as cwd. Mail (www. cwdmail. com) or Yahoo Mail (mail. yahoo. com)
Privacy on Usenet Tread carefully into Usenet if you value your privacy • There is no privacy on Usenet – Google Groups archives Usenet • Hundreds of millions of messages archived – Everything you say will be preserved for all to see – Think twice before sending any message to Usenet – Employers routinely screen Google Groups for messages posted by prospective employees • Never post your real e-mail address on Usenet – If you post your e-mail address on Usenet, you will receive unsolicited commercial e-mail (spam) – Many spam messages are for pornographic web sites or get-rich-quick frauds www. childrenwithdiabetes. com With web sites offering a richer experience than Usenet, most Internet users have never even heard of newsgroups.
Computer Security If you need help, attend a computer class – Up to date anti-virus software – Operating system patches applied as soon as they are available – Run a firewall – Never install software from an untrusted source, and an email from a friend is not trusted – Never respond to or buy anything advertised in spam • Always on connections (DSL and cable) are most at risk but … • … even a dial-up connection can be infected in seconds if not protected www. childrenwithdiabetes. com Every computer exposed to the Internet is at risk for compromise. Unprotected systems can be taken over in seconds and will certainly be compromised within hours. • Security is no longer optional and it cannot be deferred • Five requirements:
What are the risks? Everyone online is at risk Windows PCs represent the greatest target for security compromise, simply because of market share. But every system is vulnerable if not protected properly. – Primarily exploiting Outlook and Outlook Express on PCs – Usually requires the recipient to open the message – New tactic is to use social engineering • Operating system vulnerabilities – Simply connecting to the Internet exposes the computer to compromise • Spyware / Malware – Applications that take over Internet Explorer or install background programs – Pop up ads, transmit your personal data to program authors www. childrenwithdiabetes. com • Email viruses
What can happen? Repairing a compromised computer can take hours to days – Your computer unwittingly sends millions of porn, fraud, or other spam messages – Your ISP detects the problem and cancels your account • Spyware / Malware shares your private data – Browser hijacked to display marketing messages instead of real information you’re seeking – Background applications search your computer for personal data and upload it to the spyware author – “A recent survey by the National Cyber Security Alliance found that nearly 90 percent of all personal computers could be infected with at least one form of spyware. ” (Wired News, 5/7/2004) • Both place you at great risk for identify theft www. childrenwithdiabetes. com Children should never be permitted to install any software on a computer without a parent supervising. Create limited access accounts for kids, even teens, and do not share your administrative password. • Viruses / worms turn your computer into a spamming machine
How can you get infected? “Free” software rarely is and the true cost of accidentally installing spyware can be enormous – including identity theft. • File sharing applications, such as Kazaa, come bundled with spyware applications • Online game applications downloaded from the Internet • Games and other applications purchased at flea markets and computer fairs • Pirated programs downloaded from the Internet • “Paid for browsing” applications • “Paid for spare computing time” applications • If it’s free, chances are it comes with spyware www. childrenwithdiabetes. com Rule of thumb: Only install software you buy at a computer store
Every Windows user should enable automatic updates to ensure that security fixes are installed as soon as they are available. Windows vulnerabilities can result in a compromised system without ever opening email or visiting a web site. www. childrenwithdiabetes. com Windows Update
Symantec, maker of Norton Anti-Virus, publishes lists of current virus threats and other risks to computer users. www. childrenwithdiabetes. com Symantec Security Advisories
Firewalls Think of a firewall as a body guard for your computer, always there to stop the bad guys from getting in. • The purpose of a firewall is to protect your computer or network • Firewalls block unsolicited communications to your computer • Firewalls can be programmed to permit only specific incoming communications • Firewalls help reduce the risk from operating system exploits • All new routers (DSL, cable, wireless) have firewall capabilities built in www. childrenwithdiabetes. com Always on connections require a firewall
The firewall built into Windows XP is a great place to start. Enable it to prevent unsolicited communications to your computer. www. childrenwithdiabetes. com Microsoft XP Built in Firewall
Enable the firewall in your DSL or cable modem’s router for protection against Windows exploits. www. childrenwithdiabetes. com Router Firewalls
Operating System Security Resources All software has bugs, including operating systems • Microsoft (www. microsoft. com/security) – Excellent resource for PC users • Apple (www. apple. com/security) – Unfortunately, marketing piece for OS/X www. childrenwithdiabetes. com Keep up to date with your system’s security fixes. It’s essential.
Spyware Resources Spyware and malware infections represent serious compromises of your computer. Everything on it can be handed over to criminal gangs. • Microsoft Spyware Page (http: //www. microsoft. com/athome/security/spyware/soft ware/default. mspx) • Ad. Aware (www. lavasoft. de) – Removes spyware and malware – Free • Lava. Soft Support (www. lavasoftsupport. com) – Searchable forum to find out about spyware and malware infections – Learn about ways to fix compromised computers • Computer Cops (www. computercops. biz) – Excellent source for fixing compromised machines www. childrenwithdiabetes. com Spyware accounts for about half of all technical support calls to Dell
Unsolicited commercial email is called spam, taken from a Monty Python skit. Here’s an example of a spam sent on Friday, May 7 th, indicating that I had applied for a mortgage. Let’s look at this message in more detail. www. childrenwithdiabetes. com Spam
Spam – Headers The full mail headers show the actual source of the spam, plus lots of fraud. The only thing we know for sure is that this spam originated in Israel from an ISP called Netvision. It probably came from a computer that is infected with a worm that has been turned into a spamming zombie. Return-Path:
Spam – Spammer Domain The web site listed in the spam was created on April 29, 2004 by someone in Shanghai, China. How likely is it that an American obtained a home loan from a company in China? Would you want to send personal information to someone you don’t know in China? Domain Name: LOANSAVINGSCLUB. COM Registrant: Lincom Co. , LTD ZHANG SHUSHENG (loanppp [email protected] com) Room C, D , Fl 19 No. 618 YAN AN RD. (East) SHANGHAI, 200001 CN Tel. +86. 2163854111 Creation Date: 29 -Apr-2004 Expiration Date: 29 -Apr-2005 Domain servers in listed order: ns 01. thehomeloanguy. com ns 02. thehomeloanguy. com Investigate domains using the Geektools web site at www. geektools. com/whois. php www. childrenwithdiabetes. com Many spammers have moved their domains outside the US
Spam – Spammer Web Site Tracking down the real spammer is very difficult Name: loansavingsclub. com Address: 219. 148. 126. 48 person: nic-hdl: e-mail: address: phone: fax-no: country: changed: mnt-by: source: Bin Ren BR 3 -AP [email protected] he. cn 10 F Ximei Building NO. 6 Jianshe South Street Shijiazhuang 050011 China +86 -311 -5211551 +86 -311 -5211578 CN [email protected] he. cn 20040430 MAINT-CHINATELECOM-HE APNIC www. childrenwithdiabetes. com The spammer’s web site is hosted in Shijiazhuang, China. Is your mortgage loan broker there? How many of you even know where that is?
Summary • The Internet offers a vast amount of information about diabetes • There are hundreds of diabetes-related web sites, some large, some not so large • Good medical information is available on the Internet • Be cautious when you find web sites promising miracle cures • Protect your privacy as much as you can • Consult with your diabetes team before you make any changes to your diabetes care • Always practice safe computing www. childrenwithdiabetes. com Knowledge is power in diabetes management