E-Patients And The Participatory Internet- Part I

I’ve recently been attending some very excellent conferences that I will describe in more detail over several future posts. What follows here will, I hope, set the stage. As most people reading this blog are well aware, the World Wide Web and the Internet itself are simply platforms, a combination of infrastructure and tools that allow enterprising individuals to do things others might find valuable. This has always been true, but the sophistication of the technology has evolved. In the beginning, there were data files. Those files needed to be shared between laboratories in the department of defense and ARPANET was born. Soon thereafter, electronic communication, e.g. e-mail, followed. Universities joined in, and more files and more messages were exchanged. File transfer protocols (FTP) and Gofer servers (remember those?) competed with other strategies for organizing the data. Gradually, one strategy dominated and the World Wide Web came to be. Then the marketers arrived.

For many years, the Web was dominated by the movement of content. That was great when the user “pulled” or download that content. Vast collections of data were suddenly available to anyone with a computer and internet connection. But marketers ultimately took a very active role in the creation of that content. Many have even promoted “pushing” content to your home computer. Depending on your browser, spyware and Ad-blocking software, you may even have had to rid yourself of “pop-up” ads as you made your way to this site!. Unfortunately, many people in the healthcare business have not moved beyond thinking of the World Wide Web as a vaguely interactive marketing tool. That’s sad, because “patients”, many entrepreneurial small companies and even some major corporations have come to understand that the marketing era has ended.

This idea, that the World Wide Web is a big participatory playground, was given the label “Web 2.0″ by O’Reilly operatives in 2001 . Even if you dislike the term, the concepts that it imply are extremely important. In short, Web 2.0 proponents say that there has been a shift away from the Web of mere content and marketing to an internet offering connectivity and community. Where the old web offered “pages”, the new web offers Blogs, Wikis, “folksonomic” tagging and the ability to tailor your experience. We’re now able to find people through social networks, collaborate on projects, share pictures, videos, and music, and enter into virtual worlds with fellow travelers. There are more tools and services being created every day. Thus, the internet, and the sub-domain called the World Wide Web, is now a platform for connectivity and collaboration.

Sadly, in my opinion, providers of health care have not really noticed this shift in the quality of the internet. Many hospitals continue to use the Web almost exclusively for marketing. A quick look at the website of my own institution shows this all too well. Prominently displayed is the “Getting Started” link, subtitled “The easy way to find what you need at Mass General.” That phrase, “find what you need” sounds promising, but notice what you find, “Care centers”, “Find a Physician” and other ways to get you, the “patient” to come to our hospital.

Does this emphasis on marketing mean that people working in healthcare are universally unenlightened about the modern Internet? Not at all! There is plenty of action out there, as I learned last fall at a symposium sponsored by the Center for ConnectedHealth and at the recent Inaugural Summit for Behavioral Telehealth. In my next post, I’ll describe some of the exciting projects that were presented.

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