Enabling patients by listening to them | Karel van der Waarde | TEDxHSLU

TL;DR

Medicine information should enable patients by giving them clear, accessible instructions shaped by listening to their needs. Karel van der Waarde shows how dense European leaflets and poorly labeled boxes can leave patients unsure where to begin, including his 84-year-old father, who received five leaflets. Read on to see why patient involvement and revised legislation are central to making medication guidance usable.

Transcript

[Applause] wonderful thanks so much most people at some point in their life will take medicines some people will take a lot of medicines during a very short time and there are people who have got to take medicines for every day for the rest of their lives we take medicines to get better we take medicines to prove to prevent the ailments and we use ... Read More

Key Insights

• 🖤 Medicine leaflets in Europe often lack crucial information, making it difficult for patients to understand how to take their medications.
• 💁 The current system of regulating medicine focuses more on efficacy and safety rather than the usability of medication information.
• 😘 Patients, particularly the elderly and those with low health literacy, face significant challenges in understanding medication instructions.
• 🥺 Non-compliance with medication due to poor information leads to ineffective treatment and potential health risks.
• ❓ The current system of producing billions of leaflets annually, most of which are immediately discarded, is unsustainable and wasteful.
• 💁 Information for patients must be accessible and inclusive, designed to meet the diverse needs and abilities of individuals.
• 💁 Revising European legislation to prioritize patient-centered information and involving patients in the design process is crucial for improving medication information.

Questions & Answers

Q: Why should patients be involved in designing medicine information?

Patients can reveal what information they actually need and whether instructions work in real situations. Involving them in the design process can make medication guidance clearer, more accessible, and easier to use.

Q: Why are medicine leaflets in Europe often confusing?

The leaflets can be large, densely filled with black text on both sides, and provide no clear place to start reading. Medicine regulation also gives more attention to efficacy and safety than to the quality and usability of patient information.

Q: What information may be missing from the outside of medicine boxes?

The boxes shown did not clearly state what the medicine was for, how to take it, or how much to take. Patients therefore depended on a pharmacist to handwrite instructions or attach a printed label.

Q: Why can pharmacy labels and handwritten instructions create problems?

Handwriting may be difficult to read. A printed label can also cover important information already printed on the medicine box.

Q: How can unclear medication information affect patients?

Poor instructions can contribute to medicines being taken incorrectly, making treatment ineffective and creating health risks. The speaker describes a 25-year-old woman with severe asthma who feels well and runs half marathons when she takes her medicines correctly but ends up in hospital when she does not.

Q: What problem did the speaker identify in an ibuprofen leaflet?

The leaflet separated very serious side effects from supposedly less serious ones. Kidney failure, meningitis, heart attack, and stroke appeared in the less-serious category, with advice to speak to a pharmacist if they were bothersome, which the speaker found inappropriate.

Q: What examples show how much written material patients may receive?

The speaker’s 84-year-old father received five leaflets with his medicines. Each was a large, thin sheet printed in black on both sides, and Belgian versions can be three times as long because they use three languages.

Q: What changes could make medicine information more useful?

European legislation should prioritize patient-centered medication information, and patients should participate in its design. The resulting guidance must be accessible and inclusive enough to serve people with different needs and abilities.

Summary & Key Takeaways

• Most medicine boxes in Europe lack important information about the medication, leading to confusion and improper use.

• Inside the boxes, leaflets contain extensive text, lacking clarity and not providing clear instructions.

• European medicine agencies are responsible for regulating medicines but pay less attention to the quality and usability of medication information.