How Do You Become an “Informed Patient”?

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But when we become ill, that’s all we think of. A single aching tooth can dominate everything in your life.

Anne McCulloch wrote her master’s thesis on the subject of how people use web portals or entry points to seek health information both in English and French. She begins her work with this intriguing concept of how health might be defined—presumably staying healthy is one reason people try to get answers.

How Do You Become an Informed Patient

Increasingly, information about all sorts of health concerns is available online, it’s the first place a lot of people now look. Earlier in this series I talked about e-health, a rapidly growing area of study. McCulloch decided to look at one aspect of this, the “informed patient.”

How people become informed and the things they do are part of this big puzzle of consumers and technology. Besides something that goes wrong, why do people go online? According to McCulloch the research shows that they want to make decisions about their health care, they want to stay healthy, and they want to do some homework prior to meeting a health care profession, for example their family doctor or a specialist.

The Canadian Health Network website is a national, bilingual health promotion program sponsored by the federal government. Its aim is to provide trustworthy information about a whole series of things both psychological and physical that might help people become healthier. McCulloch set out to talk to people to find out whether they were getting what they wanted from this site. After all, it’s taxpayer’s dollars. Is that money being put to good use or is it being wasted?

The people interviewed spoke both English and French and were randomly chosen. Questions focused on attitudes, beliefs and behaviors in three categories: what sources of health information were used, how people sought the information they needed, and what did they do with it.

People used the internet as might be expected. But they also used other sources such as books, newspapers, magazines, pamphlets, and provincial phone lines. And they spoke with people—physicians, nurses, pharmacists, friends and those in their family. In fact, trusted family doctors ranked high on the list, something that other researchers have found to be the case as well.

This mixture of ways in which people look for things about their health is typical of the way people operate. They find something that pertains to their issue in one place and then find another source to confirm what they think is happening or to learn more. Presumably this can reduce anxiety, give people some peace of mind, or make people feel as if they are on top of things so that they know what’s coming down the road for them, for example what tests their doctor might be likely to order.

McCulloch describes using this type of knowledge. It’s all part of a new way in which people are collaborating in their health care and decision making. The doctor is no longer the one that tells people what is wrong and how to deal with it. But patients do still allow their family doctor to make the treatment decisions, even with their new-found knowledge gleaned from online and other sources.

However, an informed patient can also challenge a doctor’s expertise. Furthermore, those web surfers don’t necessarily google just for themselves. Mothers go online to get information about their children, their partners, or their aging parents. While in most cases the people in this study did not challenge medical expertise but instead supplemented it, there does appear to be a new relationship between doctor and patient emerging.

The type of health care issue can determine how and by what means people seek information. For example, an emergency probably necessitates a quick visit to the local clinic or hospital. But a chronic or nagging problem that is persistent over time is very likely to be the kind of thing that people investigate online. But using the Internet effectively also involves being comfortable with computers, knowing something about how to conduct a search, and even perhaps having the time to spend to do it properly.

We all know how much health care information is online, way too much it sometimes seems. This information can be useful, a waste of time, or even harmful. Certainly most commercial web sites have an agenda and it’s usually someone wanting to make money. But once again, McCulloch found that people learn how to get trusted information by learning from others and talking to people about how to effectively use the system.

We don’t really know yet whether informed people have better health outcomes than those who don’t spend time getting up to speed on their conditions and illnesses. But there is a certain intuitive sense that knowing more about yourself is a positive thing and that being healthy and oblivious to your body is what we want.

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