Health Care Reform Could Remove the Stigma From Illness

The new Pew Study on the impact of the Internet on American life came out last week, and as usual, someone, @mrinaldesai, to be exact, Tweeted it and I found it. Yes, this is what Twitter is for: Discovery.

In 2000, 46% of Americans had access to the Internet. Less than a decade later, 74% of Americans are online, and 61% of them are searching for health information. Pew refers to them as e-patients.

What does this mean? Well, besides the obvious, it means that access to care and information from reliable sources isn't as available as it should be compared to the demand.

And while most Americans still prefer to ask a health professional for information, they will also consult a friend or family member, or go online. And when they go online, they're not necessarily looking for information for themselves; more than half of online health inquiries are on behalf of someone other than the person searching. Once they find something, e-patients talk to someone else about what they found. Looking for health information has become a social experience. But it's pretty discreet because of this silly system we play in today. People are looking for information, but they don't want to publicly admit it in the current health care environment.

Significantly, people who look online for health information seem to prefer user-generated content. This will be a shock to the Medscapes and the Mayo Clinics of the world. That's because they are looking for something 1) recent, and 2) tailored for someone who has had a similar experience to the person they are looking on behalf of. The easiest way to find that today is online.

• 41% of e-patients have read someone else's commentary or experience about health or medical issues on an online news group, website or blog.
• 24% of e-patients have consulted rankings or reviews online of doctors or other providers.
• 24% of e-patients have consulted rankings or reviews online of hospitals or other medical facilities.
• 19% of e-patients have signed up to receive updates about health or medical issues.
• 13% of e-patients have listened to a podcast about health or medical issues.

Ironically, while we are all looking for user-generated content, very few of us are actually producing it. A very small number of Pew's population of e-patients are actively contributing. This isn't very different from what Forrester Research finds about social media and user-generated content overall: a small number of people do most of the "production," even though these platforms enable all of us to be publishers.

• 6% of e-patients have tagged or categorized online content about health or medical issues.
• 6% of e-patients report that they have posted comments, queries or information about health or medical matters in an online discussion, listserv or other online group forum.
• 5% of e-patients say they have posted comments about health on a blog.
• 5% of e-patients have posted a review online of a doctor.
• 4% of e-patients have posted a review online of a hospital.
• 4% have shared photos, videos or audio files online about health or medical issues.

If you add up all the ways to participate, and assume there are no duplications, it's still only 37%, and I'd bet -- with my non-statistical hat on -- that it's more like the same 6% who do all of those things.

A relatively small number of people are sharing their health information in the general places, like MySpace and Facebook. And I can see why: especially if you have a serious condition, you are not likely to make it public in the current health insurance environment, where a pre-existing condition can lose you coverage or even a job.

• 39% of e-patients use a social-networking site like MySpace and Facebook and, of those, only a small portion have followed their friends' personal health experiences or updates, posted their own health-related comments, gotten any health information or joined a health-related group.
• 12% of e-patients use Twitter or another service to share updates about themselves or to see updates about others, and of those, few have posted comments, queries or information about health or medical matters.

My educated guess is that there would be a lot more contributing and sharing if the health care system were reformed, and people were not trying to keep their pre-existing conditions out of sight of the insurers who rate them and the employers who recruit them. In fact, gurus are now giving classes in "what not to put on your Facebook page," and health information is part of their advice. So there may be more people secretly consuming the health information and sharing personal experiences than we know about. After all, the Internets are about discovery. We don't know how many people search for cancer on Twitter and just never tell us about it because they fear losing their livelihood or their coverage.

Follow Francine Hardaway on Twitter: www.twitter.com/hardaway

Comments

[francinehardaway]

And that's because Massachusetts has universal health care? Wow. Our fellow citizens aren't really humanitarians, are they. What happened to walking a mile in the other person's mocassins.

I actually know a surgeon who had to give up the profession because he had the same condition.

I'd go out proudly, if I were you, and tell the other guys to kiss off. However, I know that's not a good solution.

[Rogan]

I have an incurable condition called ankylosing spondylitis; it causes continuous excruciating pain. I can't work; and the grouchiness my comments here occasionally express, is symptomatic of the depression I fight every day.

But the social "stigma" may be the worst of it. I lived in Massachusetts, as a Mass Health patient, when I was diagnosed. If I discussed my case in public, seeking advice, or briefing friends, at a bar or coffee shop, I would often be verbally assaulted by strangers. I'd be loudly told my bad health costs them tax dollars, and I ought to have the decency to kill myself, or stay home, so the guy yelling wouldn't have to watch me spend money on beer or coffee, that I ought to be forced to spend on my own health care.

Because of several such incidents, I haven't left my apartment for purely social reasons, for several years. Someday I hope to be able to afford to move to another country, where things are different than they are in the United States, and I can have a social life, again. In this country, being sick, and poor, is like being in prison... maybe worse.