OrganizedWisdom Health Blog

The Power of Patients

I'm in Atlanta this weekend for the Lighthouse Lymphedema Network conference. (Look for updates from the conference on my personal blog.) This is a conference put on by patients, inviting health professionals, manufacturers, patients, families and other interested folks to get together and talk about a condition that is difficult to manage and often painful and embarrassing. Already I've met some terrific people and discovered some new products that may help me manage my own condition. I've also been talking about what we're doing with OrganizedWisdom Health -- making health search on the Internet faster, easier and better. People seem to like the idea!

This conference is an example of what people can do when they are empowered to gather information about their health and actively work to make things better for everyone. It's inspiring -- and it's one of the reasons we include blogs and message boards among our sources for our WisdomCards. (For example, check out our cards on Breast Cancer or Bursitis.) I know that as a patient, I learn best when I hear from both medical authorities and other people who have been through what I'm going through. That's why I'm here, and it should be a good weekend.

Five things to look for in a health site

The latest news on Medicare's prescription drug program is troubling, on the face of it: More than 3 million low-income seniors who are eligible for the program have not sought the government subsidy or signed up for a plan. One of them is my mother-in-law.

Vivian is nearly 80, one of the nicest people I know, and also one of the healthiest. You can see her dancing at left. (And yes, that's her natural hair color, for which she credits a Native American grandmother.)

Rather than follow the government's advice to sign up for a prescription drug plan, she's decided to keep paying for prescription drugs herself. Why? Because she's only on one regular prescription, and it costs $10 a month. Most of the available plans have co-payments higher than that, plus monthly fees. Like her, quite a few of these 3 million people may have simply done the math and decided they were better off without a government program. They're making decisions for themselves.

When the plan was first introduced in 2005, the choices were confusing enough federal officials encouraged elderly people to have an adult child or friend help them. I did this for my dad -- again, someone who doesn't take others' word for anything regarding his health, but looks at the information and makes his own decision.

Today, everyone is a health care consumer, and a lot of what we need to know, we have to find out for ourselves. It's not always easy. That's why I'm excited that OrganizedWisdom is going to be making it even easier to share and find the wisdom you need to make good health decisions. Look for these changes over the next several weeks, and watch this blog -- I'll tell you more about what's coming up as our plans solidify.

In the meantime, here are five tips for evaluating the health information that you find online:

• Know who is publishing the site and what their interest is in promoting a specific product or treatment. (Check the "About Us" section for clues.)
• Look for evidence that the site's content is reviewed by editors or medical experts.
• Remember that everyone is different. The health measures that work best for you may be completely ineffective for me.
  
• Pay attention to tone of the writing and design of the site. A cautious, scientific style may be less fun than an emotional appeal, but when it comes to your health, information is more important than entertainment.
• If it sounds too good to be true, it probably is.

Why hide illness behind closed doors?

Film critic Roger Ebert was never known for his movie-star looks. Still, it startled some people when he made plans to appear at a film festival after cancer ate away part of his jaw. Two operations to replace the missing section had failed, and he had lost the ability to speak, wore a gauze bandage on one cheek and had a drooping mouth. (Photo by Dom Navolla, Chicago Sun-Times)

So why appear in public? "We spend too much time hiding illness. There is an assumption that I must always look the same. I hope to look better than I look now. But I’m not going to miss my Festival," Ebert wrote. "I have been very sick, am getting better and this is how it looks."

In decades past, cancer was whispered about, feared, hidden from others. It was ground-breaking when First Lady Betty Ford went public with her own experience of breast cancer. Today, Newsday reporter Lauren Terrazzano, who has lung cancer, has written a dozen stories under the title "Life, With Cancer." Presidential candidate John Edwards is continuing his campaign while coping with his wife Elizabeth's incurable breast cancer. This spring, thousands of ordinary people will wear "I'm a Survivor" shirts while they walk to raise money during the annual Relay for Life.

The decision to go public about a disease or treatment is an intensely personal one. That's why OrganizedWisdom allows users to post their wisdom under a screen name of their choice, or even anonymously if they choose.

Yet increasingly, public figures and ordinary people are refusing to stay "in the closet" (in the medicine cabinet, maybe?) about their illnesses. When disease doesn't hide behind closed doors, then we can talk about it, see what it looks like, share information about it, and reach out to help those who need it. At its best, that's what OrganizedWisdom is about -- giving illness and treatments a real voice, a real face and real wisdom.