DID YOU EVER NOTICE?
Observations About E-Health
November 17, 1999After working in the high-tech, cut-throat world of e-healthcare for all of 4 months, I've come to make a few observations about the industry which I believe are... interesting?
Repurposing of content
Look closely at the actual content contained in any of the larger e-healthcare sites on the Web today, such as Intelihealth, onhealth, Discovery Health, Mediconsult, or WebMD. Notice a striking similarity? You should, because many of these sites are simply repurposing (e.g., copying with permission) U.S. federal government content on their sites, or licensing extensive content from the actual content providers. I suppose the NIH is happy they get so much free publicity off of this "repurposing," but it means that what you're getting on most of these commercial sites, you could get off of the Federal government. The "value-add" that the commercial sites bring you is, apparently, different (not necessarily better) formatting, and lots and lots of advertising.
Look at their news feeds (if they have one). Notice the same old familiar names in them...? Reuters? AP (unless you're one major e-healthcare site which apparently still can't seem to get a simple AP feed!)? Times New York Syndicate? Are the stories fresh or are they sometimes a day or two old? Tell you what. You want fresh, updated news on health topics? Go to a news site, it's that simple. CNN, The New York Times, ABCNews, MSNBC, and the LA Times all have excellent updated-daily health news. Why rely on incomplete feeds or outdated stories to get your news fix?
So XYZ company is sponsoring a part of the content on a Web site. What does that mean? Most of the time, you simply do not know. Most Web sites don't disclose what exactly a sponsorship (or "in association with") means. Does it mean that the sales side has no influence over editorial content, as it does in newspapers and (most) magazines? You would assume so, but you can't be sure because most sites simply don't disclose this information.
And does "in association with" mean something different than a sponsorship? If so, what? If an organization decides to partner with one e-healthcare Web site over another, why was that done? Quality of information provided? Or... Money?
When, earlier this year, there were some rumblings of unethical behavior on one of the big e-health sites, guess what the response was? The industry suddenly closed ranks, became pals with one another, and said, "Hey, wait a second, we can do a better job... We'll show you exactly how." It's amazing that when hundreds of millions of dollars of sponsorships and advertising are suddenly on the line what a priority ethics can suddenly become. Well, that and a little prodding by the press.
Can the e-healthcare industry really do any better than the industry as a whole (e.g., through trust-e?). Well, if trust-e is any sign (Industry: 5, Consumers: 0), probably not. Consumers don't want yet another industry initiative which does little to protect them from Big Business. They also don't want Big Government interfering in their lives in this manner. What consumers do want is simple assurances that information being provided is untainted by money, and that full disclosure is given about what is done with the information they give to the site about themselves.
One of the reasons an online health record will never catch on (from the consumer's perspective, anyway), is that they don't trust for-profit companies with that kind of information, unless they absolutely have to. There have simply been too many abuses of our personal information (try sitting through dinner without a telemarketing phone call, for instance) to trust yet another company with any more. Until they can prove otherwise.
Features (or lack thereof)
What drives what is placed on an e-health Web site? Consumer needs or demands or... Money? My experience is that it is both, but again, consumers aren't usually informed as to why a new content area is available on a Web site, when a major area of health information is missing.
Why choose one medical encyclopedia over another? Quality of information contained therein? Or... Money? Again, a little bit of both. You'd think it would be because someone was assigned a task to go out, evaluate all the electronic medical encyclopedias available, and choose the best one. Then, negotiate a contract. Maybe it happens that way on some Web sites. But on others, it may be that encyclopedias are chosen because they are more readily available than others (e.g., an easier-to-negotiate contract) or because the terms of the contract are better.
Again, let me emphasize, there is nothing wrong with making choices based upon these kinds of factors. It's just that in 9 out of 10 cases on sites like these, the consumer never knows. They are simply, dumbly, and blindly supposed to hand over all of their trust to an e-health Web site. Trust is earned, however, and it is difficult to trust a site which doesn't address these kinds of issues. I don't know of one online today that does.
This is probably the saddest part of them all. Everyone on the Web "gets" that in order to have a thriving Web site, you need a thriving community. Some sites have either acquired whole communities (like WebMD did with SHN) to provide this functionality, while other sites have gone and acquired great community talent.
In the end, though, it's all about leveraging emotions and building an emotional attachment to the others you communicate with in that community. I'm sure most community members don't look at it so cynically, but I know that others within this business (especially those on the business side) do exactly that. Is there anything wrong with leveraging people's feelings of attachment and friendship to make money? Absolutely not. There are entire business models and other communities online which are based upon this very model. Thriving, well-designed and well-run communities.
E-health Web sites simply added this as an additional feature and one more reason to visit them. But e-health should be different, shouldn't it? After all, you're not buying a book there, or looking to read up on the latest entertainment news. You're there for something which threatens your life or the life of a loved one. The last thing which should ever be leveraged on such a site is a person's emotional and psychological support. Yet it is done without a second thought.
Like any Internet industry, the e-health industry is a hard one to do right and to do fairly. But unlike any other Internet industry, the e-health industry must do it right and do it fairly. Every reader who visits these sites might be relying on them, to varying degrees, for accurate, up-to-date, and reliable health information and features. They will then use this information to help make their own informed healthcare decisions about themselves or a loved one.
It's no wonder I believe that such an industry is rife with real conflicts of interest which occur every day. That the relationships involved which enable these sites to thrive and grow are so complicated and fraught with possible discrepancies, that few people understand them and the full potential of the risks involved.
That's why the U.S. Federal government, through the NIH and their healthfinder service, provides such a wealth of information to you for free and without having to wonder where, why, or how it came to be. I've always recommended such services, and now, after seeing the other side, I cannot recommend them enough.
Last reviewed: By John M. Grohol, Psy.D. on 29 Mar 2015
Published on PsychCentral.com. All rights reserved.