Quality Health Care and Information
How to Assess Online Health Information - Five Questions to AskOriginally posted on womenshealthmatters.ca
Statistics tell us that most web users now look for health information online at least occasionally, and that many of us see the web as an important source of health information. In response to this interest, there are literally thousands of sites that offer health information on various topics.
Among the crowd, how do you decide whether a website is a reliable source of information? Lori Lyons, former Women’s Health Matters Content Manager, offered some thoughts on the subject.
‘I don’t think that you should see any website - even Women's Health Matters – as the definitive source of information,’ Lyons said.
‘When we put information together on the site, we hope that women will read our articles and that it will help them to have better and more informed conversations with their doctors, with other health-care professionals and with their friends,' she said.
'A health-care provider who knows the details of your health history and health concerns will ultimately always be a better source of information for making personal health decisions.’
Still there certainly is a role for online health information and some dramatic differences in the quality and reliability of what is available. Lyons suggested five questions you should ask yourself about any site that you use.
It is always important to think about where the information comes from. Any reliable site should have an ‘About Us’, or somewhere on the site that tells you who has created and paid for the site. There are several important reasons to think about who created a site.
First it gives you some idea of what to expect, and can also help you be alert to potential biases in the site. If an individual created it you are likely to find an emphasis on personal experience and the practical wisdom that comes from coping with something day to day. If it comes from an advocacy organization you may find an emphasis on how our health-care system could serve people better in dealing with a particular health situation. Hospitals or large disease-specific groups like the Canadian Cancer Society are likely to focus on medical information and have access to a lot of medical expertise.
‘So much of the information we see on the Web comes from the US,’ Lyons said, ‘and fortunately for Canadians, we often do have access to relatively similar levels of medical technology. However even in simple things differences crop up, for example, the Americans use a different scale to measure cholesterol. And of course around the issues of payment and how you actually access medical treatment, there are dramatic differences between the two countries.’
Considering who created the site, also gives you clues to the next question – why they made the site.
What is the purpose of the site?
The purpose of a site can have a big effect on the material presented there.
‘Obviously,’ if a company is trying to sell you something it is in their interest to make it as attractive as possible and to minimize side effects or any problem with a treatment,’ Lyons said. Still, for-profit sites can be useful, as long as users are wary about their commercial motives. ‘You should always compare the information from commercial sites against other sources of information, but I don’t think you should discount them altogether.’
Of course, there are other motives for creating a website besides profit. Individuals may create a site for purely altruistic reasons, because they were frustrated in their own experiences with the healthcare system and because they want to share their hard-won knowledge with others.
Hospitals, clinics and other healthcare facilities often start sites because they see it as an extension of their mandate to provide care to their communities and because it helps raise the profile of their services.
Researchers and academics may create websites to share their work with colleagues. Although some research sites make an effort to explain their work to consumers, others are intended primarily for other academics.
Can you understand the site?
People often begin searching for information online because they want to understand more about their condition or about information that their doctor is giving them. Yet, all too often, people use sites that they don’t really understand.
‘People often underestimate how much clarity is connected to quality. If you don’t understand it, it is not good quality information to you, no matter how medically or technically accurate it might be,’ Lyons said.
When you begin looking for information, keep at it until you find a site that is easy to read and that has a perspective that seems to make sense to you. 'Once you have a good grasp of the basics, if you want to go off and explore some controversy about treatment in the medical literature, that's great. But that probably isn’t where you want to start.’
How easy it is to find information within a site is also part of its quality. ‘With a health site, being able to find your way easily from information about causes, to information about treatment or support is part of the quality of the whole.’ Of course, looking for a site that is easy to read and use, doesn’t mean you should accept any information source without considering the basis of the information.
What is the information based on?
In some ways medical information, or any fact-based information, is like gossip, Lyons said. When it comes to gossip and personal information, the quality of the information is only as good as its source.
‘We need to understand that the same thing is true for medical information. How do you know? Who told you and what are their qualifications for knowing? Do they have professional training? Is the information based on studies? Do they have first-hand personal experience? All these are different ways of knowing. Any site that you visit should tell you how they know the information they are telling you.’
For medical information, a double-blind randomized clinical trial is considered the most reliable kind of information. This is a method of studying a treatment or a treatment strategy that is statistically designed to eliminate biases and to give objective information about how something is likely to work for an average group of people. The Arthritis Society of Canada offers a clear and detailed explanation about what clinical trials are and how they work. But what about the other types of information you see on medical sites?
First there is the anecdote. I took this treatment and this happened to me. This is most common on personal sites, but the medical literature also accepts the idea that a story about a single person’s experience can have value. When published in a medical journal this sort of story is called a case study. Anecdotal stories are probably the most common way we discover the long-term side effects of treatments, so they definitely have value as long as you understand that what happened to one person won’t necessarily happen to you.
Is the information current?
On the Web, things can be published very quickly, but that doesn’t mean that everything on the Internet is current. When assessing the quality of medical information, look for a date that tells when the material was last updated.
In medicine, available treatments and even treatment approaches can change very rapidly. If something doesn't have a date on it you can't tell whether anyone is keeping the material up to date. It is true that some things don't change, like basic human anatomy, but even on pages where this is the primary concern, a recent date tells you that the material is being tended, and that changing perspectives are being considered.
Privacy and other considerations
Health and medical information is something that most of us consider extremely private. In fact many people are drawn to the web for medical information because they feel they are anonymous when asking their most personal questions.
Although it may not strictly be an issue of quality, Lyons warns that how you interact with a site and the steps it takes to protect your privacy are important considerations.
'I know all of those policies – terms of use policies, privacy policies – make most people's eyes glaze over with boredom, but they really do tell you some important stuff. What kind of information are they collecting about you? Will they call you during their next fundraising drive? Will they sell your name to someone else who will endlessly send you email about amazing potions for menstrual cramps and impotence?'
Lyons suggests reading the site's policies carefully, especially before giving any personal information to join a mailing list or discussion area.
'If you really want to use a service, but are uncomfortable that they are asking for too much information – lie,' said Lyons. 'It's your privacy you are protecting.'
Source: Revised by Gail Balfour, Editor, Women's Health Matters, Dec. 24, 2003. Written by Lori Lyons, and reviewed by by Jean Greenberg, Project Manager for the Women's Health Matters Resource Database Project.