Online health information---a manifesto?

With over 60% of Americans looking to the internet for health information, the question for those of us who care about health is, "how do we increase the chances of people finding good information?" There are a few components to this question. First, what kind of information is available? Second, how is it found? And third, who is producing it, and for what purpose? Here are a few observations which are, unfortunately, not yet supported by data, but may serve as a starting point for future discussion.

For my purposes here, I will use the term "health information" (HI)to mean anything about health sought for or delivered to an internet user.

What is available?

Health information online includes basic disease information, treatment options, referrals, support, and nearly anything else imaginable.

How is it found?

HI can be delivered actively, via user searches, or passively via spam and ads. The passive delivery of HI can be quite sophisticated, with ads delivered based on your search terms and your location, among other things.

Where is it coming from?

This is perhaps a less complicated question, but requiring a more lengthy answer, as it further explains the two previous questions. Online HI comes from medical centers, bloggers, social networking sites, and various commercial interests. Searching is, in a strange sense, passive---we usually actively enter search terms, but rarely do we specify from where we get the answers. Results are in no way passive. Starting a search at a reputable medical site (such as mayoclinic.com) produces very different results from a google search. The internet allows for delivery of information based on the user's query, inserting a new actor into the transaction.

When people seek HI from doctors, friends, or family, the person delivering the information often has the interests of the patient in mind, or in the case of doctors, has an actual ethical responsibility to deliver the best information. Search engines have no such duty. In fact, they often have a duty to monetize the search for the search engine's ad clients. Most people know what kind of relationship they have with doctors, family, or friends, but they do not consider the relationship they have with their search engine. It is not indifferent.

Social networking sites may be seen as an extension of "friends and family", but even this is deceptive; facebook can deliver ads and "suggestions" based on your personal data.

Blogs have a potential to deliver HI in an ethical way, but this is also problematic. The blogosphere is in its adolescence and neither bloggers nor readers can be sure of anything. As a physician, I have an ethical obligation to provide accurate content---to my patients. But what about to my readers? And what about bloggers who fail to disclose that they are writing commercially for someone with other purposes? Or the blogger who succumbs to offers of money for links? Or even a blogger using google adsense?

There problem of HI delivered by ads, search engines, and commercial interests is for better or worse the job of the FDA, FTC, and other govermental regulatory bodies.

But writers, journalists, and health professionals have an opportunity here. We have an opportunity to produce and deliver accurate and (as far as is possible) unbiased information. To do so, we need a way to police ourselves. There have been a number of attempts to do this, some more successful than others.

Blogging is a bottom-up phenomenon. You can't create bloggers, and you can't force bloggers to behave in a certain way, but you can attract them to blog collectives and offer them other resources. Health bloggers are often unaware of their ethical responsibilities. Existing in an in-between world, they feel free to behave as they wish. Some will not be interested in changing, but others may be attracted to a system that allows them to understand their responsibilities as providers of content that can potentially harm others. Ethically-inclined health writers may self-select, eventually forming collectives via links, umbrella sites, or badges that connect providers of reliable content. Such systems could be available to both health journalists and bloggers who are health professionals.

Such as system would encourage journalists to provide accurate information, and encourage health bloggers to provide accurate information consistent with their professional ethics. Advantages for the writer would be an "inprimatur" and "link-love". Such a system might also raise the google rank of these sites, helping them to compete with commercial interests. Advantages to readers are similar: a way to judge the accuracy---or at least the transparency---of online HI.

Developing such a system is tricky. It must be flexible enough to allow many different styles but rigid enough to weed out those who through ignorance or less innocent motives are providing deceptive or erroneous content on a regular basis. For example, the Healthcare Blogger Code of Ethics, which is one of the more successful systems out there, supports as an ethic "courtesy". This may be seen as problematic in the blogosphere where heated discussions are integral to the medium. The HONcode, linked above, is also problematic for blogs, in that it asks bloggers to insure that the content of comments is accurate, which is not feasible.

No matter how well planned, there is no way to guarantee the success of a system of self-regulation for online health writers. As with most things internet, such things are usually emergent phenomena, but there is little disadvantage to seeding the process. Eventual extensions of such a system might include online forums for collaboration and real-life and virtual workshops for improving the craft.

There is no reason to believe that people won't continue to look online for health information, and journalists and healthcare providers have an opportunity to intervene positively in this process.