What patients really want to know when managing their medication

Between the doctor’s consultation and everyday treatment

“I would have liked more information about my medication”

Patient organizations, healthcare researchers, and healthcare institutions have been receiving this feedback for years. This does not mean that there is generally a lack of information. Professional information, package leaflets, websites, and educational materials are available for almost every medicinal product.

The real challenge lies elsewhere: Many questions only arise once treatment has already started, in situations that can be fully anticipated neither during the doctor’s consultation nor in the package leaflet.

The World Health Organization assumes that, in chronic diseases, around half of all long-term treatments are not carried out as intended. Influencing factors include not only side effects and organizational barriers, but also gaps in knowledge and uncertainties in managing treatment.

For pharmaceutical companies that take patient centering seriously, it is therefore worth taking a closer look at the question: What information do patients actually need? And when do they need it?

The need for information does not end with the doctor’s consultation

Patients do not make treatment decisions in the consultation room, but in everyday life.

This is where questions often arise only in specific situations:

What happens if I have forgotten a dose?
Could my symptoms be a possible side effect?
Do I need to seek medical advice because of this?
May I take the medication together with other medications?
Why should I continue the treatment even though I do not currently notice any effect?

From the perspective of medical professionals, many of these questions may already have been answered. However, studies show that a considerable amount of medical information is not fully remembered or correctly classified shortly after the doctor’s consultation.

In addition, information needs change over the course of treatment. What seems relevant at the start of treatment becomes less important later. At the same time, new questions arise that did not yet play a role during the initial explanation.

What patient organizations have long been advocating for

Patient organizations regularly point out that good patient information goes far beyond providing facts.

The focus is on four requirements:

Understandability
Medically correct information is not automatically understandable. Technical terms, probabilities, or complex risk descriptions often make it more difficult to classify information.
Patients need information that is understandable without prior medical knowledge and provides concrete guidance.
Relevance
Not every piece of information is equally important for every person.
While some people affected are initially interested in the mechanism of action and treatment goal, others are primarily concerned with questions about side effects, suitability for everyday life, or drug interactions.
The individual context determines which information is actually helpful.
Availability at the right moment
Information needs arise depending on the situation.
A detailed informational consultation at the start of treatment does not replace the question that arises three weeks later after a forgotten dose.
Patients therefore want information that is available when it is needed, not only when treatment starts.
Participation instead of one-way communication
International patient organizations are increasingly emphasizing the importance of patient empowerment.
Patients want to understand their treatment, make informed decisions, and be actively involved in their healthcare.
To do this, they do not need more information, but information that gives them confidence in how to act.

Where the greatest uncertainties arise

Surveys, healthcare research, and digital patient interactions reveal recurring patterns. What stands out is that information needs often do not arise randomly, but focus on specific situations in everyday treatment.

Three situations in which information gaps become particularly visible:

Situation	Typical question
Forgotten or delayed dose	“What should I do now?”
Occurring symptoms or possible side effects	“Is this normal, or do I need to act?”
Everyday situations such as travel, work, or concomitant medication	“How can the treatment be implemented correctly in my current situation?”

There are often similar challenges behind these questions. Although corresponding information is generally available, many patients find it difficult to transfer general recommendations to their specific situation. Especially in the case of unexpected events, there is a desire for guidance and confidence in how to act.

Medical information itself is often not the actual problem. What matters instead is whether it is understandable, situation-specific, and available at the right moment.

Why this perspective is relevant not only for healthcare providers

For many pharmaceutical companies, patient surveys primarily focus on satisfaction, adherence, or treatment outcomes.

However, understanding specific information needs is at least equally relevant.

Those who can identify which questions arise during treatment, in which situations uncertainties occur, and which information is perceived as particularly helpful, gain valuable insights for patient support programs, communication strategies, and service offerings. Such insights are also becoming more important in the context of patient engagement, as they can help to better understand treatment experiences and support needs. We explain the role patient-related data plays in this in the article Patient Engagement in Transition: How Real World Data Opens Up New Perspectives on Treatment Success.

The primary focus is not on additional content, but on tailoring existing information more precisely.

How such information needs can be made visible

One challenge is that many of these questions arise depending on the situation and are captured only to a limited extent in traditional surveys.

Digital health applications open up new possibilities here. If surveys are displayed directly in the usage context of documented medication, insights are generated closer to actual everyday treatment. We have already explored in more detail how digital treatment support can be used as a source of patient-related insights in the article Digital treatment support as a source of robust patient insights.

Unlike retrospective surveys, experiences can be captured where they arise, in the specific usage context and along the course of treatment.

The insights gained from this do not provide answers to every question. However, they help identify information gaps more precisely and understand patient experiences more systematically.

Conclusion

When affected individuals speak of an information deficit, this is usually not due to a lack of available information. Rather, the appropriate information is often missing at the right moment in everyday treatment.

Patients primarily seek guidance in specific situations of their treatment. They want to understand what they should do when questions, uncertainties, or unexpected events arise.

For pharmaceutical companies, the challenge is less about providing additional information, and more about aligning existing information and support services specifically with the actual needs of patients. This can meaningfully complement the work of healthcare providers and health insurance funds and help provide orientation in everyday treatment.

However, in order to systematically capture such needs, insights into real-world everyday healthcare are required. Digital data collection directly from those affected can help make information gaps, uncertainties, and support needs visible. The actual gain in insight lies not in data collection itself, but in a better understanding of what patients really need throughout their treatment.

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