How do I decide: Collecting information
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 have put together some questions that can be useful for preparing a decision. These questions mainly aim to find all the necessary information.
The next step will then be about weighing and assessing the information collected to arrive at a decision.
Question 1: What exactly is the disease or health problem I am dealing with?
Consult your doctor if you are not sure which disease or health problem you are dealing with.
Doctors have the duty to inform the patient anyway. This means that they must fully inform you about your condition and all treatment options. This also includes information about possible – wanted or unwanted – effects of the therapy.
The medical terms often help you to get more information, too, for example when searching the internet. But make sure to use the right term: for example, the medical term for high blood pressure is hypertension, which can be easily confused with hypotension – the term for low blood pressure.
Question 2: What consequences will the disease have?
The medical term for how a condition will most likely develop is prognosis. The answer to this question is very important when deciding about a treatment. Because if a condition heals on its own within seven days, but the treatment only shortens this by half a day, there can be different opinions on whether or not the treatment is worth having. An example: people who have acute sinusitis are usually healthy again within two weeks – regardless of whether they take medication or not.
A prognosis cannot tell you for sure what will happen in your particular case because people react differently to an illness or treatment. But a reliable prognosis will at least tell you how a disease usually progresses.
Ideally you can find information on how a disease progresses in people whose circumstances are similar to your own. These may be people who
- are about your age,
- are of your sex (woman or man),
- are in a similar stage of disease (mild or severe),
- are in a similar state of health (for example, if you have other conditions).
Unfortunately, there is not always information available that takes all these factors into account.
Question 3: What treatment options do I have?
The following questions are important:
- What can I do on my own?
- Which medications are there (both prescription-only and over-the-counter)?
- Is surgery or another intervention an option?
- What costs are covered by health insurance?
Many people are also interested in alternative or complementary treatments. However, the same criteria and requirements apply to these treatments as to other types of therapy. It helps to know the correct name for the disease when considering the options that you are interested in – in case you ask experts about them, want to discuss the treatments with your family and friends or look for more information.
Practical information also helps:
- Where can I get the treatment?
- How much time will it require?
- How much could it cost?
- How much will it limit my daily activities?
Question 4: What are the possible advantages and disadvantages of the treatments I am considering?
All treatments can have adverse effects too, even if they can often be ignored. The following questions can help you weigh benefits and harms:
- How likely is it that I will have a benefit from the treatment at all?
- How great are the benefits of the treatment? Will I feel slight improvement or maybe even get completely healthy again?
- How likely is it that the treatment has adverse effects?
- How great can harm from the treatment be? For example, what is the lowest dose of the medication that still has an effect on me and at the same time has as few adverse effects as possible?
- When will the effect start, and how long will it last? Will the treatment have an immediate effect, for example? Or at what time of day will I have to expect adverse effects or side effects?
- Can other therapies that I make use of influence the treatment? These would also include complementary therapies from alternative medicine or dietary supplements.
- Will the treatment restrict my daily activities, for example my ability to work, to drive a car or to be there for my family?
- And last but not least: Where can I get the treatment?
Question 5: How well have the treatments been studied scientifically?
Treatments may have been known and used for a long time. In these cases, their effects are generally well studied. They might also be considered standard, meaning that new treatments are compared with the known and established therapy. Or they are relatively new and still being tested after their approval.
If a drug has been on the market for less than 5 years, for example, it is regarded as a relatively new treatment. This means that not much is known yet about its adverse effects – especially in people who have one or more illnesses. Treatments for many conditions may also have benefits and adverse effects that we do not know everything about, either. However, ideally you will be told how reliable and scientifically sound the information is.
If you need more information, talk to your doctor or another health expert, or ask at the pharmacy. If you have found new information, it may be helpful to speak with your doctor again about any questions that are important to you.
You also have the right to consult a second doctor. A second opinion will give you security – especially when you are dealing with a serious disease, a complicated decision, or a rare problem.
Exchanging ideas with others who have the same condition or with family and friends can also help you find out what is important to you. Or you can turn to a patient counseling center or another patient organization.
But in the end, every decision in matters of health is a very personal one: what is right for others does not have to be your best option.
Read about the second stage of making a decision. How you can evaluate the knowledge you have gained and arrive at a decision.
How do I decide: Evaluating information
Additionally, we describe why we include these topics on Informed Health Online.
How do I decide: How can Informed Health Online help?
We have put together detailed information on some of the topics. If you are interested in one, click on the respective title:
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.
Why it is important to test treatments in good-quality trials
Author: Institute for Quality and Efficiency in Health Care (IQWiG)