Bringing a Sense of Reality to Health Care

Last night the BBC NEWS Web site put up an interesting story about an unintended consequence of the availability of medical information through the Internet. Here is the basic argument:

Health information online is breeding a generation of cyberchondriacs - people who needlessly fear the worst diagnosis after surfing the net, say researchers.

A team at Microsoft studied health-related Web searches on popular search engines and surveyed 515 employees about their health-related searching.

Web searches had the potential to escalate fears - like a headache was caused by a brain tumour, for example.

Here is a first-order account of the details:

Microsoft conducted the study to improve its own search engine.

Roughly 2% of all the Web queries were health-related, and about 250,000 users, or a quarter of the sample, engaged in a least one medical search during the study.

The researchers found Web searches for common symptoms such as headache and chest pain were just as likely or more likely to lead people to pages describing serious conditions as benign ones, even though the serious illnesses are much more rare.

Searching for "chest pain" or "muscle twitches" returned terrifying results with the same frequency as less serious ailments, even though the chances of having a heart attack or a fatal neurodegenerative condition is far lower than having simple indigestion or muscle strain, for example.

About a third of the 515 Microsoft employees who answered a survey on their medical search habits "escalated" their follow-up searches to explore serious, rarer illnesses.

Although the work does not give firm proof that searching the web increases health fears - users may simply be curious about a condition - the researchers say it is likely in some circumstances.

I find this interesting for two reasons. From a theoretical point of view it may provide us with a useful source of data regarding the distinction between information and knowledge. From a more practical view it may tell us something about the prevailing sense of reality about health in an age of deteriorating health care.

Regarding the first point, this study provides a window into what people do when they are given easy access to a large quantity of information. The data may be somewhat biased by subjects who were Microsoft employees; but any organization that is seriously interested in general questions of public health could use this study as a point of departure (assuming that they have the funding to do so). From my own point of view, the study provides an opportunity to assess the consequences of drawing upon information without some support from a knowledge source. Thus, when the BBC reported a spokeswoman for the National Health Service arguing that seeing a doctor will always be better than consulting the Web, the operative part of her argument is the observation that you can talk to a doctor. The actual knowledge of a patient's condition emerges from the doctor's skill in organizing and conducting the conversation about the patient's symptoms (and, of course, part of that conversation involves determining whether those symptoms may be imaginary). Such a conversation is a social activity, grounded more in the world of Jürgen Habermas' model of achieving understanding through communicative actions than in the naive world of question-answering through natural language software technology or the even more naive world of pushing key words into a search engine. Note, also, that the doctor may not have a full command of all the relevant information that can be found through Web searches; but that doctor still knows how to conduct the conversation as a means of determining which of all those information sources is likely to be most relevant to the patient's situation.

This may also raise an interesting point about the economics of health care. Where information is concerned, any fee structure can be based strictly on access. Think, for example, of the way in which the city taxes you pay finance your access to your public library card and thus your access to everything in that library. By shifting the fee-for-access from the user to advertisers, Google put a new twist into the rules for this game; but the game is still about a fee structure for access to information.

Conversations, on the other hand, cannot be subject to such a fee structure. Where access to information is concerned, you can probably fall back on the naive model that you do or do not find what you are looking for over the course of some period of time. Conversation, on the other hand, is rarely strictly about finding something. Indeed, the conversation itself may involve a significant meta-discussion over why it is taking place at all and what the participating agents (most likely both patient and doctor in this particular example) hope to gain from it. This is more amenable to a fee-for-service model, which is probably based on the amount of time consumed by the service engagement. (Since I just dropped off my wife's car for service, I would frame this as being more about the labor time than the price of the parts.)

When we talk about health care reform, we have to begin by recognizing how little we understand about the underlying economics. It sometimes seems as if medical institutions, pharmaceutical industries, and insurance providers all have specific strategies for muddling the underlying narrative of where the money comes from and where it goes. The result is a population of patients that have no more idea of what is going on behind their health care bills than they had of how and why their banks were making decisions about mortgages. Perhaps the confusion behind the current financial crisis could serve as an object lesson for the confusion over the financing of health care, but my guess is that there are too many players with too many vested interests for such an object lesson to have any impact.

However, if the problem of bringing a sense of reality to the economics of health care is a massive problem, bringing similar reality to a patient's sense of his/her own health may be even greater. "Cyberchondria" is only one factor that distorts that sense of reality. Another can be conversations that patient's have with each other. Think of the popularity of talking about illness in day-to-day conversation; and think of how that popularity probably owes much to the opportunity conversants have to (over) dramatize the condition of a patient (who may not even be participating in the conversation). Our predilection for gossip, even when it is not malicious, was cultivating our capacity for hypochondriac thinking long before we had the Internet to provide us with information about serious diseases. Then, of course, there is that massive advertising campaign mounted by the pharmaceutical industries, saturating us with "information" about conditions, symptoms, and side effects that we had never known existed. I seem to recall once hearing a doctor (probably on NPR) declare that the most dangerous phrase in the English language had become "ask your doctor!" With all of these distorting factors, it is no wonder that our sense of our own health is as distant from reality as the sense we had of the security of our retirement funds!

Perhaps this is a problem best suited to the community organizing skills of our President Elect. If we are to recover a sense of reality of our own wellness, that recovery may be achieved through grass-roots activities concerned with health as a matter of regular maintenance, rather than with "health maintenance" as a business plan for increased revenue. At the risk of borrowing shamelessly from Georges Clemenceau, I have come to feel that my own health is too serious to be entrusted to a Health Maintenance Organization or any of the other similar institutions currently in place. If communities could be empowered to deal with the fundamental maintenance of wellness, then they might raise the power to shift the priorities and procedures of those institutions that put health care in crisis in the first place. Since this is not my primary area of expertise, I can confess to being a bit shy on the details; but this strikes me as being as good a target for "the audacity of hope" as any!