Are we getting the best bang for our buck by using the Health Information Highway?
One of the consistent themes of this series has been how researchers are determining whether health information technology is producing results and, stepping back even further, how to go about trying to answer that question.
Dr. Judith A. Krajnak worked on the Action for Health project as a postdoctoral fellow unraveling this complex story. She identified the problem this way: while almost two billion dollars have been spent in the development of online health services in Canada, hardly any money has been spent monitoring whether this investment is achieving desired results. Are people in a wired world more knowledgeable about their health concerns? And perhaps even more elusive is determining whether they are actually healthier in the long run by acquiring this type of knowledge.
Web sites with health information abound. The problem is that “official” sites such as those sponsored by governments may not be developed with consumers in mind, exactly the problem defined by Kajnak. For example try finding answers to your health care questions on the Public Health Agency of Canada site. Not only is the page boring, but it’s also confusing and hard to search. No wonder most people just use Google.
Krajnak developed a very interesting sequence of questions to better understand users’ experiences with online information. She began with awareness (do people know what’s available) followed by a determination of accessibility and satisfaction. We’ve certainly all had the experience of searching for something and not coming up with anything remotely resembling what we’re looking for. But let’s assume we hit the nail on the head. Does this then contribute to a better understanding? More importantly will consumers make more informed decisions about what to do once they have found valuable health information online? Perhaps, but they’re not the only ones affected.
The most likely scenario is that people will read up on their condition, disease, or problem and then discuss it with a health care professional, perhaps a family doctor. While physicians purport to want their patients well informed and ready to assume responsibility for their own care, they are also frustrated by cyberchondriacs—those people enjoying poor health and finding lots of evidence that there is plenty wrong with their bodies and minds. Family doctors dread these people coming in with reams of downloads and print-outs, all of which they want to share. Worse yet, they might challenge the physician’s expertise.
Krajnak found many interesting themes on what people are up to online in terms of looking for health care answers. For example, people are divided on whether drug advertising is a good source of information. Others like what they read on certain sites but are unaware that it is actually sponsored by a drug company. Or, perhaps, they get up to speed on what they think is wrong with them but don’t admit this to a physician, but then weave it into the conversation with “I’ve heard that….”
This then led Krajnak to introduce the question of whether access to information affects the patient-provider interaction. As we’ve already seen, problems can arise, but there are also opportunities for good collaboration. In the best of all worlds patients are well informed and physicians are satisfied that they are learning to help themselves and manage their illness. Governments are happy because people don’t go to the doctor or emergency room unnecessarily and costs are reduced. Everyone wins.
Of course this ideal has yet to be achieved, but it’s a laudable goal. Krajnak points out problems that still exist. In a society that purports to provide equitable access we need to be careful to be inclusive. The Internet is not a substitute for other forms of information. Nothing beats good dialogue with an expert. Then there are those who cannot speak the language, those who are elderly or have no computer skills, and those in remote areas with no online access might be left out. Even when people have access to public libraries, they might be concerned about looking up private medical matters with someone behind them waiting to use the terminal.
There are other lessons to be learned about consumers’ use of online health information services according to Krajnak. Users’ experiences need to be considered or the sites simply won’t be used. How people respond and use sites should be considered before implementation, not tacked on as an afterthought. Professionals developing sites do not necessarily understand how the general public behaves.
Online health information is clearly here to stay. Determining how web sites are used and evaluating their efficacy not only for individuals but for large groups and even entire populations will remain a research challenge for a long time to come.
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What is a focus group?
Some of Dr. Krajnak’s research results came as a result of focus groups. This is a type of qualitative research that originated in market research used by business. The idea is that when people interact in a group they stimulate and provoke each other to talk about things they might not if they were interviewed alone. Groups of 10 people or so are videotaped and their responses analyzed, perhaps using a software program designed for this purpose. In this way researchers can develop new understandings of attitudes and behaviors.