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Keynote Address

Institute for the Future’s Health Horizons Program Quadrus Conference Center, Menlo Park, California November 3, 2004

Last Update: November 3, 2004

Back in 1995 at the beginning of the Internet era a famous New Yorker cartoon shows two dogs talking, as they do in cartoons. One dog who is sitting in front of the computer turns to the other and remarks, “On the Internet, nobody knows you’re a dog.”

Institute for the Future

I don’t even have a dog. But I still find it amazing the impact that one individual can have on the Internet.

I decided to start a website about the time that the New Yorker published its dog cartoon. It was on February 12, 1995, that my first page about diabetes went up. That page, which I then called On-line Resources for Diabetics described and linked all the diabetes resources not just on the Internet but also on local bulletin boards and systems such as AOL and CompuServe, which at that time were not fully integrated into the Internet.

Later, I called it On-line Diabetes Resources, when it became clear to me that to call someone a diabetic wasn’t politically correct. As a new diabetic, I didn’t know.

My Diabetes
It was only a year earlier — in February 1994 — that the general practitioner that I saw at the VA Clinic in Santa Barbara, California, near where I lived asked me, “Has anyone ever told you that you have diabetes?”

Nobody ever had. At the time I had no idea what wonderful news this would be for me.

The doctor had ordered blood tests because of a pain that I had gone in to see him about. One of the blood tests came back showing that I had a dangerously high A1C level of 14.4 percent. The A1C tests measures how much glucose is stuck to a certain blood fraction.

That diagnosis changed my life. I had been divorced since 1981 and was enjoying my independence very much. I owned my own place and worked as a freelance writer, so I didn’t answer to anyone. Life had been so easy that I put on more than a few pounds.

The doctor prescribed one of the standard sulfonylurea drugs and told me to get a blood glucose meter. He suggested that I join a local support group, which I did, but it didn’t help much, because nobody else seemed serious about dealing with the disease.

No one in my family has ever had diabetes, and I didn’t know anything about it. I wasn’t as disturbed by my diagnosis as many people seem to be. But it pushed me to change my lifestyle and to learn everything I could about the disease.

That’s one of the reasons why I got an Internet account the following month. One of the books about the Internet that I bought showed that there was a Usenet newsgroup about diabetes that looked like the place for me to start.

That was easy enough, but I wanted more. One of the articles on that newsgroup mentioned that there was something called the Diabetic mailing list, which I joined in May 1994. The advice and support that I received were so much more than I got locally that this mailing list soon became what I considered as my on-line home.

That’s the main reason why I say that the diagnosis that I have diabetes was wonderful news. The other is because I take better care of myself than before. My most recent A1C test showed that it’s down to a normal 6.2. I weigh a little less, exercise more, and feel better than before my doctor gave me the diagnosis that I had diabetes. The Internet helped me find our more about diabetes than I ever imagined was available.

I had hoped that the Internet would give me that information and support. What I never dreamed was that it would lead to marriage. Or that my website would becoming another consuming passion of mine.

My Site Just Growed
I never imagined what the Internet would become. I didn’t dream that my site would amount to much. It just “growed like Topsy” in the famous anti-slavery novel, Uncle Tom’s Cabin.

At last count, the On-line Diabetes Resources part of my site lists, links, and describes about 100 mailing lists, nine newsgroups, 14 Internet Relay Chat networks, three other national services, five local bulletin board services (BBSs) — as well as about 1,400 websites.

The 16 Web pages that comprise the On-line Diabetes Resources are undoubtedly the most comprehensive source of information about what is available about diabetes on the Internet and the other major on-line services.

Why would anyone keep such a comprehensive directory where people can find information about diabetes?

That’s something I ask myself regularly as I update these Web pages. Keeping that directory up-to-date takes daily work. And it is work, even though I’m not paid for it. Writing magazine articles is what pays my bills.

Let me admit it right off. I was fooled. The World Wide Web tricked me. I never dreamed that it would amount to so much.

My site was the third website about diabetes. One of them soon disappeared, so my site is the second oldest. The National Institutes of Health’s diabetes site went online two or three months before mine.

When I started these Web pages, the Web itself wasn’t much. The main reason why I started these Web pages was because I could see all the problems that people were having in subscribing and unsubscribing — particularly unsubscribing — to and from the mailing lists, which are email rather than Web resources. Not everybody kept the message that they got when they subscribed, and they sometimes became frustrated when they were overwhelmed with the volume of the messages and tried in vain to unsubscribe.

They would frequently ask how to unsubscribe, something that can be very difficult without directions, but simple if you know how. That’s why I called my first diabetes pages a “FAQ,” which stands for frequently asked questions.

Another reason for the FAQ was to let others members of the mailing lists keep up to date with developments elsewhere in cyberspace. I just never thought that there would be so many developments!

On-line Diabetes Resources was all on one Web page for a long time. But the explosive growth of the Web dictated breaking out the Web sites. It now takes 15 separate pages to describe and link the Web sites alone. For convenience, these Web pages are divided into logical categories.

And these Web sites are just the most important ones dealing with diabetes. All the substantive sites dealing with diabetes are linked. The only ones I purposely exclude are those that have no new information about diabetes on them or are sites for companies that are pushing products that I remain skeptical about.

Even though it’s a lot of work, keeping these Web pages about diabetes up-to-date has proven rewarding to me in non-financial ways. As a person with type 2 diabetes myself, it has helped me directly to stay in touch with the latest thinking.

Furthermore, the great number of messages people have sent me telling me how useful the site is has been psychologically rewarding. I think of it as playing my part in what Howard Rheingold calls the “gift economy” of the Net: People taking what they need and giving back in some measure without expectation of profit. All my life I have been taking in information. Now it is so satisfying to be giving back what I can.

Writing about Diabetes
From 1989 to 1993 I was an editor of a business magazine. When I left the magazine, I continued for six more years as a contributing editor, which means a freelance writer. But because of my personal interest in diabetes, in 1996 I began to shift my focus. My first article about diabetes came out in the August 1996 issue of Diabetes Interview (now known as Diabetes Health).

Subsequently, I have written at least 430 more articles or web pages about diabetes. I link and briefly describe all of these articles on my main diabetes page, www.mendosa.com/diabetes.htm. But since I list most of these articles by publication, as this page grew it because more and more unwieldy.

Fortunately, I have received a lot of help. First, I added the capability to search my site. Then, because of the kindness of a frequent visitor to my site I was able to add a menu to all of my diabetes pages. Then a frequent visitor from India designed logos for my site and helped me manage subscriptions to my newsletter.

Years ago an M.D. in San Francisco suggested that I need to have a way for readers to see what was new on my site. In December 2000 I started a regular “Diabetes Update” newsletter. I currently send it out monthly by email to about 7,000 readers. It is free, contains no advertising, and includes brief descriptions and links to my new or updated articles as well as book reviews, important research developments, and other items of interest. A few days ago I sent out the 76th issue of my newsletter.

Glycemic Index
While a directory of Internet resources was my first diabetes focus, my articles about diabetes soon became the Web pages that received the greatest number of hits or visitors. My first serious interest in a diabetes topic was the glycemic index, which ranks foods on how they affect our blood glucose levels. So far, I have written 17 articles and co-authored one book on this subject alone.

One of my glycemic index pages became so popular that it caused me some grief and cost me a lot of money. When the magazine Woman’s World published an article in March 2003 that directed its readers to my main article about the glycemic index, my site was overwhelmed with visitors. For a couple of months after the article appeared, about 18,000 people were downloading it each week. That took a huge amount of bandwidth — up to 27 billion bytes per week (more than four times that of the huge Children with Diabetes site that my friend Jeff Hitchcock runs). Consequently, my ISP increase my monthly fee from $77 to $427 — something that I just couldn’t afford, since I offer this Web site as a public service. Eventually, a friend who runs a diabetes section of the huge About.com site volunteered to host the two files that take the greatest bandwidth.

Email
My articles about the glycemic index and other aspects of diabetes are, in fact, so popular that I have been overwhelmed with email questions and phone calls. In the past few years I have written an average of about 6,000 messages a year, almost all of them because of my website. When I started my website I certainly didn’t realize that responding to questions would take more of my time than the site itself. I do answer my email and my phone calls, both because I feel the obligation and because I can always learn how to express the answer better. However, I do not generally respond to students who have a class assignment or people who are offering miracle cures.

I never forget that I am a journalist — not a medical professional. I even have a canned message that I need to send out every once in a while that says, “Your doctor would be the best person to address your concerns. I wish that I were free to help, but if I did, it could be construed as practicing medicine without a license.”

The Context
The people who read my site and write or call me are quite different from most people who have diabetes. Motivation is the biggest difference. Those people who go on the Web looking for help with this disease are special because as a group they are doing a lot more to control it do as to prevent or postpone complications. These people know that they are primarily responsible for controlling the disease. Until people with other diseases who rely on their doctors and caregivers, those of us with diabetes know that this disease also burdens us with having to control it.

My site gets about 20 million hits a year, according to weekly statistics my ISP sends me. While that may sound like a lot, look at the context. Two other diabetes sites, the American Diabetes Association’s site and Children with Diabetes, certainly get more. While I can’t convert hits into the number of unique visitors, I know that even now only a small percentage of those of us with diabetes are online.

More than 18 million people in this country have diabetes, according to 2002 government statistics. Of these 5 million haven’t been diagnosed yet and therefore have no idea how to control the disease.

On the 13 million people who have been diagnosed, how many are online? About one-third of them.

According to the best statistics that I have seen, 62 percent of Internet users, or 73 million people in the United States, have gone online in search of health information. Since 6.3 percent of the population has diabetes, this would imply that up to 5 million of these online people have diabetes.

We all know that people with diabetes can only control the disease. It can’t be cured — not yet, anyway. The nearest we now have to a cure is a pancreas or beta cell transplant. As great as these technologies are, they have two serious limitations. Because there are so few potential donors in relation to the need there can be only a few transplants every year. Secondly, all transplants require continuous doses of drugs to prevent the body’s immune attack.

The most likely cure, I believe, will come from research into those undifferentiated cells that have the capacity to develop into beta cells and other types of cells. These stem cells are what the enlightened voters of California funded yesterday when they approved Proposition 71 to invest $3 billion in this research. As a native Californian and resident of the state for most of my years — until I moved to Boulder, Colorado, this August — I am proud of California.

My guess is that we will have a cure for diabetes in another 10 years or so. I certainly hope so. Only then will I be able to retire. 


The Institute for the Future

The Institute for the Future is an independent, non-profit research firm based in Menlo Park, California, with more than 30 years of experience in forecasting social, economic, and technological change. It was founded in 1968 by a group of former RAND Corporation researchers with a grant from the Ford Foundation to “enlarge existing understanding concerning technological, environmental, and societal changes and their long-range consequences and to develop new methodology to carry out such tasks.”

In the years since its founding, the institute has pioneered both technological and social science research. One of its founders, Olaf Helmer, was the inventor of the Delphi method of forecasting and was the first to apply it to social issues. Paul Baran, another IFTF pioneer, invented packet switching, the foundation technology for the Internet. Jacques Vallée, a current IFTF Board Member, led the Institute’s computer research in the early 1970s, creating the first computer conferencing system for the Internet, then called the ARPANET. Roy Amara, who served as president for nearly 20 years, established IFTF as a leading think tank, while Ian Morrison, who served as president in the early 1990s, expanded IFTF’s unique practice in health and health care.


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