Why is high quality health information important for patients?

Medical and healthcare information are sometimes complex for patients, therefore it is important to ensure they receive clear and understandable information

For every two medicines prescribed by doctors, one will be taken in the way the doctor advised and the other will not¹. Medicine dosing errors – such as taking medicine at the wrong time, taking too much, or not taking enough – mean a patient’s condition may fail to improve and could get worse^1,2. There are many reasons why patients don’t take medicines as advised, which may include forgetfulness, not understanding instructions, or not believing the medicine is helping^1,3,4. High quality patient information can help to overcome some of these problems.

Before any medical treatment begins, it is the doctor’s responsibility to ensure that the patient (or a person legally allowed to make decisions on their behalf) understands what it’s for and that they agree to receive it⁵.This is called informed consent. In practice, this means that the person giving consent must receive clear, understandable and relevant information about what the treatment involves, including expected benefits and risks, any alternatives, and what may happen if the patient chooses not to go ahead with treatment. If the suggested treatment involves taking part in a research study, patients must also understand the research aims, and any extra tests or clinic visits involved in the study.

Informed consent is more than just a legal responsibility for the doctor. Without high quality information upfront, it’s very difficult for any patient to make the right decision when it comes to their health & what treatment plan best suits them. But once involved, a well-informed patient is more likely to stick with their agreed treatment plan than one who doesn’t^1,6,7.

What makes patient information effective?

Healthcare professionals often assume that their explanations and instructions are easy to understand⁸. In reality, they are often misunderstood⁸. Health literacy is the term used to describe the ability of patients to read and understand the words and numbers they come across in a healthcare setting (e.g. dosing instructions)⁹. Most adults are comfortable reading health information written in language that could be understood by a typical 12-year-old, but one in every five adults finds this difficult⁹. Older people may have additional challenges if they have problems with seeing, hearing or reasoning⁹. People with reduced health literacy can be helped to understand complex ideas if the doctor speaks slowly, using everyday words, or if information is given in short sections rather than all at once. Written information that includes pictures and illustrations can also help. In one study, patients had a better understanding of when to take their daily tablets if they were shown a visual aid (a diagram showing coloured tablets), compared to spoken or written instructions alone⁵.

Good communication with a healthcare provider makes it more likely that you will get the intended benefit from your treatment, and helps to ensure the care you get is truly ‘patient-centred’

Finding high-quality information online

With the growth of the internet and social media, patients today have access to more information than they could ever hope to read¹⁰. With so much available, it can be hard to know which sources to trust. Fortunately, there are some simple ways to check that the information is likely to be reliable,
as outlined in detail in IAPO’s Patient information and health literacy briefing. One is to look at who is responsible for producing the information. Do they have suitable qualifications or experience? Do they have any reason to provide biased information? The information should say when it was last checked or updated, as medical recommendations and treatment options often change over time. It should also be made clear which statements are backed up by published evidence and which are simply personal opinions or personal experience. However, sites which focus on sharing the personal experiences of other patients (e.g. blog sites) can still be reputable information sources, with some valuable insights to offer.

Improving communication with your healthcare team

Medical and healthcare information can be complex, and may take a while to understand fully, even for people with good health literacy. You should never be embarrassed about asking as many questions as you need about why a medicine has been prescribed, how it should be taken, what side effects to look out for and what to do if you are experiencing problems. Some patients find it helpful to use their own words to repeat back what they believe a healthcare professional has said, to confirm they have understood correctly. Good communication with a healthcare provider makes it more likely that you will get the intended benefit from your treatment, and helps to ensure the care you get is truly ‘patient-centred’ – i.e. best suited to you as an individual.