News/Commentary

About four years ago, one of our best friends had to make a critically important medical decision, one which gave him his last, best chance at preventing a rare form of cancer.

He had to decide which of three approaches he thought best for him. Like every patient, he wanted the best result with the least discomfort.

He is a skilled information-gatherer, although at the time did not know how to use e-mail. He had done his reading. He had a list of questions for each of the three medical experts he was consulting. Still, there were question marks. He, a decisive man, was not sure what he thought best.

I went online to see if there was other information which might aid him in deciding.

In about 30 minutes, I had a small stack of print-outs—about 30-36 pages—of information.

- A second opinion service which required only that he have his expert doctors send his slides to another expert center.

- Abstracts of studies about his problem from Medline, the National Library of Medicine’s service for doctors and others who want to know what the study said, first-hand.

- Information about managing recovery.

He quickly flipped through the pages and set them aside, talking to us, repeatedly glancing over at the paper stack as he talked.

It seemed to me that all of this new information might be making his job harder, not easier.

“Look, this seems to be irritating you. It didn’t take me any time at all to find this. Do you want me to pitch it? It won’t hurt my feelings.”

“No!” he thundered. “I am irritated because none of my big-time experts told me this was there. I plan to read every word later.”

I explained to him that these doctors were among those who contributed to textbooks which covered his problem and, as they were at the top of their field, it probably did not occur to them that he might want online help.

“After all, you are militantly anti-Internet,” I added.

“Not any more,” he said. “I will read every word.”

We were surprised by his reaction but that was only the beginning of his conversion to using the Internet to find out what he wanted to know.

Today, if he doesn’t know quite where to go, it does not take him terribly long to figure it out or he calls someone he knows will know.

He was the one who had to have the “difficult” surgery. He was the one who would have one long, slow year of recovery, eating the blandest of foods.

In addition to learning more before he made his treatment decision, after his surgery, this man had e-mail during his recovery. It was a way for him to stay connected to his colleagues when he still did not feel up to seeing many people. It was a lifeline to his friends or groups he cares about, who are all over the world.

This man’s age puts him over the line in terms of being a predicted Internet user, based on demographics. Those predictors are getting some surprises. People much older than baby boomers are online,as he is now, in large part due to their grandchildren, their health needs or their special interests.

Last Thursday, he led the children playing on the water—- putting out crab pots, rowing in a kyack to the little market one mile away and, in general, going non-stop on a beautiful summer day. The kids were the ones who could hardly stay awake by supper-time. He was still going strong.

Now, even on vacation, on his desk sits his new laptop. He is not the greatest with it, to be sure. He is great at being sure he knows how to do what he wants to do online.

Not only did our friend never expect to be an Internet citizen, neither did anyone who cares about him expect that, either. In fact, the news that he had a laptop was greeted with disbelief. “A laptop? Is it turned on?”

Yes.

What difference did the pre-treatment Internet search make for him?

It confirmed much of what he had been told by doctors.

It clarified all of the information sources available. He likes knowing where those are, whether he uses them or not.

It provided a lot of information about recovery, which, after all, only he had to endure—-with the help of family and friends.

It gave him the peace of mind of knowing he knew as much as any patient could.  “If only I had…” or “Why didn’t I know that..” are words he never had to say.

His doctor might see it differently. In the end, he took the lead doctor’s advice. However, what that medical professor may not understand is how certain this patient was about his decision and how clear he was about the difficulty of his recovery.

No surprises. What every patient wants. No surprises.

He also had a happy medical, and personal, ending.

Many physicians and other health experts feared the Internet as the enemy of quality, accurate health information. Indeed, in 2000—-which seems 100 years ago in Internet terms—-there was a lot of wrong or even dangerous information, such as promising cures which didn’t exist, for example.

Not quite one decade later, the Pew Internet and American Life Project, a pioneer in tracking the use of online and health information (among other online uses it tracks), find that what they call “e-patients” use it all. (For this study, the California Healthcare Foundation was a partner.)

This study, and many physicians, call patients who use the Internet as an integral part of their care, “e-patients.”

• E-patients continue to rely on the trusted professionals and people in their lives. They seek their advice still.

• An important finding is how many skilled searchers go online to do health searches for people in their lives who do not have those skills but need up-to-date information.

• However, e-patients use the Internet to do health searches. Those searches influence their health care decision-making.

• The Internet is a “means to accelerate the pace of discovery.” E-patients can find out what the latest treatment recommendations are from the research itself, for instance.

• The Internet information and its use by E-patients can “sharpen the questions someone might ask when they do get to talk to a health care professional.”Sharpening the questions patients asks health professionals means that the quality of the questions is going up. Here “sharpening” does not imply hostility but clarity. Example: “Do you think the surgical or medical approach to this problem is better? Why?” Without the Internet, most patients would not know there are several ways to treat their medical problems.

You, the E-patient, are doing exactly what the Internet enables you to do. Get the best medical and health information, online and in your own life through trusted professionals, family members or friends.

Sometimes, things actually work out they way they are supposed to. In this year when much has not, it is reassuring to see the power of accurate, timely information at work in the lives of E-patients and offline patients who turn to them for assistance—-those who are not frequent searchers online.

Pew Internet and American Life Project

Overview

“Americans’ pursuit of health takes place within a widening network of both online and offline sources. Whereas someone may have in the past called a health professional, their Mom, or a good friend, they now are also reading blogs, listening to podcasts, updating their social network profile, and posting comments. And many people, once they find health information online, talk with someone about it offline.

…”This Pew Internet/California HealthCare Foundation survey finds that technology is not an end, but a means to accelerate the pace of discovery, widen social networks, and sharpen the questions someone might ask when they do get to talk to a health professional. Technology can help to enable the human connection in health care and the internet is turning up the information network’s volume.” (Emphasis added)

…”But in the end, experts remain vital to the health-search and decision-making process. Americans’ longstanding practices of asking a health professional, a trusted friend, or a wise family member persist as patients pursue good health. These are practices which, in the words of John Seely Brown and Paul Duguid “will not budge” and therefore require designers of any new health care application “to look not ahead, but to look around” in order to see the way forward.”

Source: Pew Internet and American Life Project/California Healthcare Foundation, June 11, 2009, Online.