Lost in information
Simon Webster, information officer, MS Trust
Open Door - August 2009 page 2
picture: Kate Andrews
We are awash with information. Typing 'multiple sclerosis' into Google produces more than 8 million results and it is said that there is more information in one issue of the Sunday Times than a medieval scholar would have come across in a lifetime. But are we actually informed by all this information? And why is it important that we are informed about health issues?
Effective health care, particularly in a variable and unpredictable condition like MS, requires a partnership between health professionals and the individual being treated. Without information and an awareness of the options available, the individual is ill equipped to engage in informed discussion with their doctor, nurses and therapists. Research shows that access to information increases levels of confidence and involvement in the decision making process and reduces feelings of anxiety and isolation.1
The concept of evidence based medicine is at the heart of health care practice and provision and provides a good model for considering health information.
Evidence based information creates a hierarchy of types of evidence based on the degree of objectivity. For instance, in a double blinded randomised controlled trial (RCT) neither the people receiving the treatment nor those treating them know if they are receiving the active treatment or are in a control group taking another drug for the condition or an inactive placebo with no medicinal effect. This is seen to carry more weight than a trial in which participants and doctors know what treatment they are receiving where the results might be influenced by expectations or preconceptions about what it might do.
It is important to remember what research evidence actually shows. Trials indicate the average effects across a group of people, some of whom will have done better and some worse. In larger trials it is less likely that uncharacteristic or rogue responses in individuals will skew the results. These are considered more persuasive than case studies, which report the treatment of individuals or very small groups.
Objective research is more inclined to focus on the relative merits of the treatment and not to consider the outcomes and quality of life issues for participants in the trial. Anecdotal information is more subjective and principally based on the response of the individual. This information is based on shared experience of a treatment and is less likely to take account of other variables, such as other medications, changes to diet or routine, etc. Similarly, gathering anecdotal information will tend to attract people who agree with the point of view.
This is not to say that there is no benefit in anecdotal evidence, however, it is important when assessing information to distinguish between a snapshot of individual experiences and scientific objectivity.
Much initial information about health research comes in stories in the popular press where phrases such as 'miracle cure' and 'wonder drug' appear regularly, misleading readers and raising expectations beyond the intention of the original researchers. The Behind The Headlines pages on the NHS Choices website (www.nhs.uk) give good appraisals of some of the stories that appear in the press, explaining what the research really says and how it may be applied.
When reading information about health issues, whatever their source, consider if it is:
- Relevant - is it applicable to your situation or symptoms?
- Up-to-date - old information is not necessarily wrong, but has something more recent been published?
- Accurate - is it logical and understandable, fair and balanced? Are the sources of the information used listed? Be wary of information that makes bold, unsubstantiated claims.
- Reliable - how authoritative are the authors, do they know what they are talking about? Is the information intended to inform, or is it promoting an opinion or a product? Do other reliable or trusted sources agree with this information?
Then make up your own mind.
Reference
- Coulter A, et al.
Assessing the quality of information to support people in making decisions about their health and healthcare.
Oxford: Picker Institute; 2006.
- For help finding information about MS, contact the MS Trust Information team - 0800 032 3839 / infoteam@mstrust.org.uk
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Disclaimer
Open Door articles are reproduced as published. They are not updated to take account of subsequent developments. Use appropriate caution in acting on the information in any article.