How do I decide: How can Informed Health Online help?
Fortunately, many health-related decisions can be made without specifically looking for information. But it is not always easy to decide what to do, particularly when the decisions concern a severe disease or a demanding therapy. We describe how we take these things into account at Informed Health Online.
We do not give recommendations
Health advice is quite popular. Whether in books, TV shows, newspapers or magazines - experts and authors have new advice and recommendations every day.
Some readers may find themselves a bit confused browsing the pages of Informed Health Online. This may be down to the fact that we make an effort not to give recommendations. And this might seem somewhat odd to many.
Using a list of questions, we will explain why we have made a conscious decision not to give recommendations – and why we still believe that our information can help you to make a decision.
Question 1: What will happen if I just do nothing, and wait and see?
Laying out the effects of a disease and risks is basic information that we always research.
For us, it is not enough to simply list the possible effects and consequences of a disease. It is also important to describe how frequently they occur. This means describing the probability that a certain effect will happen. But it is often difficult to find concrete numbers for these risks, and sometimes only rough estimates are possible. This leaves unknowns that we do not want to just let disappear.
It is also important to us that we do not present an evaluation of the possible effects of a disease or risks, but to leave that job to the reader. We do not want to be the one who interprets the numbers for you. Whether someone feels threatened by a particular effect of a disease, and at what level of risk he or she does, is an individual matter. We consciously hold back on making judgments here.
Question 2: What options do I have to do something about it?
We first collect the most important courses of action. Our selection is based on different sources, but mostly includes interventions that are used in Germany and treatments that have been studied in scientific trials.
Question 3: What are the advantages and what are the disadvantages of the treatments?
Our methods play a major role here as well.
When two treatment options are compared, the comparison must be very closely examined to see whether it is indeed fair. To compare different medical options, research trials are usually required. Because the individual trials can produce different results, it makes sense to compile the available trials that are of good quality. This is why we look for what are called systematic reviews when we want to examine the advantages and disadvantages of different treatments. The results of these reviews are the most reliable sources on the current state of research.
It is also important to use numbers in a way that does not lead people to over- or underestimate them.
You will frequently find that other texts or sources may recommend therapies, for example, that we describe as having advantages and disadvantages that are "not clear" or "have not been studied enough". These ambiguous statements can be less satisfying than clear recommendations. Yet they do contain a frank assessment of what the case is.
We do not make a judgment about the benefits and harms of a treatment until they have actually been studied well enough for the results to be trusted. This means that a certain level of certainty has been reached. Others may be quicker to jump to conclusions, but they also will have to take the risk that they will more often be wrong. We prefer to remain skeptical until the advantages and the disadvantages have been properly studied.
Yet it often turns out that only a few of the available treatments are well studied, and sometimes none of them are. This is frustrating for us too, but we would still rather describe this state of uncertainty than create the illusion of certainty.
Question 4: How do I weigh the pros and cons for my individual situation?
This is the most important reason why we do not usually make recommendations. We see the step of weighing the pros and cons as one that you take yourself. Even though we have to make decisions about things every day, too, we do not see our decisions as a standard for others to follow. Because Informed Health Online is independent and aims to provide information that is neutral, we also have no interest in making specific treatments appear to be better than others.
Question 5: Do I feel informed enough to make a decision?
The fact that medicine very often deals in probabilities makes an individual decision more difficult. You will find a lot of these types of sentences in our information: "Out of 100 people who take the medication, 5 will have a benefit". No one can predict whether you will be one of the 5 who experience a benefit or one of the 95 who do not have a benefit and may even have a side effect. This means: you will always have to make a decision even though you have no guarantee that it is the right decision. We cannot deny that some uncertainty is quite normal.
When we choose the health-related questions that we answer in our information we try to cover areas we assume are interesting to our readers and helpful for them when they make a decision. For this reason we look to qualitative studies when choosing our topics. In these studies patients are asked what is important to them, for example.
Also, before publication most of our texts are read by people without any specialized medical knowledge. This is known as user testing, and it gives us feedback that we use in revising the texts before we publish them.
Our concept: Scientific research as a basis for individual decision-making
We believe that scientific research can offer an essential basis for making decisions regarding matters of health because it best conveys a realistic description of the benefits and harms of treatments or interventions.
It does not matter whether you want to decide on your own or seek advice from others: the job of weighing the options and making a decision lies in your hand.
You can find more aids for preparing decisions here:
We have listed questions in a text we believe can help you to collect useful information that you will need to prepare for a decision.
A second text discusses how you can weigh the information you have collected in order to evaluate it and then arrive at a decision.
Here is one further aid that you can download as a PDF or print out:
Decision aid for treatment options (in German)
A decision aid is a special kind of patient information. It can help you weigh the facts and your personal attitudes and values against one another.
Author: Institute for Quality and Efficiency in Health Care (IQWiG)