Gathering information and making a decision

In this section, we have put together some questions that can be useful when making a decision. They aim to help you find all the necessary information. The next step will then be about weighing the pros and cons and assessing the information you have gathered to arrive at a decision. This is where our decision aid can be helpful.

We also describe how we take these issues into account on our website InformedHealth.org. And last but not least you will find a list of self-help groups and information centers in Germany. You can move through the different steps using the menu on the right.

• The first step: Gathering information
• The second step: Evaluating the information
• Decision aid
• How can InformedHealth.org help?
• Self-help and information centers

Your doctor will usually be the first person you go to if you have questions about medical issues. But many people look for information on their own and often use the internet, even though it's especially difficult to know which websites are trustworthy. The following questions can act as a useful guide:

• Who produced the information?
• How old is the information?
• What sources were used?
• Is the purpose of the information to sell something?
• Does it make unrealistic claims, e.g. promise a cure?

Seals such as HONcode and afgis can serve as a rough guide to the reliability of a website. These seals make it easier to find certain information about the publisher of a website. But they do not guarantee that the health information provided is correct or complete.

On informedhealth.org you will find the HONcode seal on the bottom right in the footer. The contents of our website are produced in accordance with the methods of evidence-based medicine. They are based on the best evidence that was available at the time of publication. All of the articles are checked on a regular basis and updated if necessary.

Along with other providers of health information in Germany, we are members of the "Gute Praxis Gesundheitsinformation" (Good practice guidelines for health information) group.

In order to make the right treatment decision for you, you and your doctor need to work together. It's called "shared decision-making" when

• the doctor and patient share information on the possible diagnostic tests and treatment options,
• they decide together what is possible, what is worth trying, and what is best suited to the patient, and
• both agree on the decision.

When preparing to make a decision about a medical intervention, it may be helpful to find answers to the following questions:

• What is known about the condition and its possible consequences?
• What is the natural course of the condition?
• What are the diagnostic and treatment options, and what possible benefits and risks do they have?
• How likely are the various interventions and treatments to help? How likely are the side effects?
• What wishes and needs will play a role? And what fears need to be taken into account?

Once these aspects have been considered, the best course of action can be discussed.

Decision aids are designed to help patients gather important information in order to make a decision and consider various aspects relevant to the decision. These aids are available in different formats, including online forms and paper leaflets.

Depending on the topic, decision aids may contain information on the course of the disease with or without treatment, the risk of complications, and alternative treatment options. Using a decision aid can also help you find out which information you still need and make it easier for you to prepare for a talk with your doctor.

The information in evidence-based decision aids is supported by scientific proof. Before they are published, the decision aids are also tested by people who have the condition to check whether they are truly helpful. There are general-purpose decision aids that can be used for a variety of situations, and specific-purpose decision aids that deal with particular treatments, screening tests and vaccinations.