If you were diagnosed with a life threatening illness where would you look for information?

We tend to think of the Internet as the main source of information on health. But what about other sources? How exactly does online information stack up against information received directly from people or through printed materials?

In order to find out myself and my colleagues designed a research project to find out how online sources fit into all of the ways people obtained health care information. The project was led by Dr. Ellen Balka and involved Dr. Joanne Stephen from the British Columbia Cancer Agency, and my colleague Bev Holmes who is now a PhD Candidate at Simon Fraser University. Dr. Stephen was able to tap into a group of young women diagnosed with breast cancer and we approached them and asked them to share their stories with us.

This was an interesting group to study for a number of reasons. Cancer is usually associated more with older people, but when it happens to someone who is young—in this case women with families, careers, and a sudden huge disruption in their lives—the system doesn’t always work so well. The women in this group summed it up in three words: nothing fit me. Not the health care system, not the support, and not even the prosthetic bras that were available.

Since we wanted to find out all the ways these women sought help, we didn’t specifically ask them about Internet usage. We asked that they email us their stories using some sentence stems as a guide. For example, we gave them prompts like, “When I was first diagnosed with cancer the thing I needed to know most was…”

Over 70 women contacted us and about half of those ended up sending us their stories. Now keep in mind, this was all done on line, so these women had computers, knew how to use them, and were used to surfing for information. But what they told us was surprising.

After reading what they wrote we asked ourselves five questions:

1.       What was the motivation driving these women to look for information about their condition?

2.       What type of information was being sought?

3.       How was that information delivered, e.g. online, in print, by another person?

4.       How useful was the information?

5.       What did the woman do with the information once it was obtained?

The interesting answer to the first question is that women obtained information because they wanted to know what was going to happen next. They had a diagnosis - now what happens? They were scheduled for surgery- what exactly will be done? Or perhaps they had had a round of chemotherapy - what happens now?

In terms of the type of information that was sought, it sometimes boiled down to one simple scary question: Am I going to die? But what was clear was that women wanted up-to-date, expert, and trusted advice on all aspects of their treatment regime.

It was the way the information was delivered that was particularly interesting and unexpected. About a third of women in our group talked to someone after they were first diagnosed, that’s where they got their information. Another third went to look at print materials, particularly Dr. Susan Love’s Breast Book, sometimes referred to simply as “The Bible.” But when we got to the usefulness part of things, it got even more interesting. Almost everyone was happy with the information they received from their physician, or a nurse; people were also mostly satisfied with the print material. But the Internet? That got very mixed reviews. People loved it, hated it and everything in between. They called it excellent but also overwhelming and scary. And remember, these were savvy women who knew what they were doing.

So that was their initial move. Eventually most went online, usually later in their disease course. But not everyone. In fact, some people just went online to see what was available at the library. People still like to hold something in their hand and read a book. And two people never mentioned the internet, even though we were in touch using computers.

And what did they do with the information? Besides wanting to know what happens next they wanted to empower themselves, become strong and hopeful, verify what they had been told perhaps by their doctor, and make sure what that they were getting the best and most up-to-date treatment. Knowledge can be reassuring.

We still don’t know very much about how people end up with information that they find useful, satisfying, trustworthy, and valuable to themselves personally. We also don’t know enough about what people are doing that they’re not sharing with their doctor, for example using complementary therapies. We also wondered how women felt being so heavily involved in the treatment process. We think there are some women who are overwhelmed by too much information, too many choices, and the confusing and bewildering options available. Clearly, there is still an important role for someone like a nurse to guide people through all of what they find on line. So the Internet plus a trusted professional to help sort and interpret things might be what most people want.

If you have a comment or question for Guenther - send him an email at gkrueger@knowitallhealth.com