Lack of trust in the medical system plays a key role
A new review study by the Max Planck Institute for Human Development shows that nearly one in three people choose to avoid medical information about serious health conditions if they fear they may be affected. One of the main reasons driving this behavior is a lack of trust in the medical system. The study has been published in Annals of Behavioral Medicine.
Don't open the letter. Many people avoid medical information out of fear of being overwhelmed, stigmatized, or because they don't trust the healthcare system.
© MPI for Human Development
Early detection is often the key to successful treatment outcomes. Yet many people do not take advantage of preventive care, screening programs, or checkups. What is behind this reluctance? It can't be explained by a lack of information or high costs: In countries such as Germany, health insurance companies inform their members about relevant services and often cover the costs. So, what is stopping people?
Researchers at the Max Planck Institute for Human Development in Berlin have a rather surprising answer: One in three people do not want to know about serious illnesses-even if they might be affected. "One possibility is that the choice not to know is a deliberate one. We have investigated this phenomenon-which we call deliberate ignorance-in other areas of life and found that there are a wide variety of reasons for it," says Ralph Hertwig, Director of the Center for Adaptive Rationality at the Max Planck Institute for Human Development in Berlin and one of the co-authors of the study.
Meta-analysis of 92 studies worldwide
The researchers analyzed data from 92 studies with a total of 564,497 participants from 25 countries, including Germany. They wanted to know how widespread the avoidance of medical information is and to understand the reasons behind it. Such prevalence estimates were previously lacking at the global level. Yet these insights are crucial for designing effective healthcare systems-for example, in ongoing efforts to empower people to take greater responsibility for their own health.
The studies analyzed looked at conditions including Alzheimer's disease, Huntington's disease, HIV/AIDS, cancer, and diabetes. The authors defined information avoidance as "any behavior designed to prevent or delay the acquisition of available but potentially unwanted information." This includes putting off or not attending doctor's appointments, refusing medical tests, failing to return for test results, or ignoring patient education information.
The results show that choosing to ignore serious illnesses is by no means unusual: Nearly one in three participants avoided or were likely to avoid medical information. Avoidance was highest for the two incurable neurodegenerative diseases: 41% for Alzheimer's disease and 40% for Huntington's disease. It was somewhat lower for serious but treatable conditions like HIV (32%) and cancer (29%). At 24%, avoidance was lowest-but still worryingly high-for diabetes, which is chronic but manageable.
Why people avoid medical information
The analysis of the reasons of this behavior is particularly revealing. The researchers identified 16 key predictors of medical information avoidance. Surprisingly, gender, race, and ethnicity were not among them. Rather, the strongest predictors were:
- cognitive overload; diagnoses such as cancer can be complex and stressful
- a low sense of self-efficacy, that is, a lack of confidence in being able to navigate healthcare decisions
- fear of stigmatization if, for example, an HIV test is positive
- and, finally, lack of trust in the medical system, coupled with lower expectations of positive treatment outcomes.
Given the data available, the researchers were not able to examine the extent to which information avoidance affects patients' health outcomes. This would require further studies. Direct comparisons between countries were not possible either. Accordingly, the study does not show whether avoidance behavior in Germany differs from that in France or the US, for example.
Implications for health policy
Nevertheless, important conclusions can be drawn for future health policy: The findings show that medical information avoidance is by no means unusual and not necessarily irrational. Rather, the research highlights the influence of the social and structural environment. "Our findings suggest that lower trust is associated with higher information avoidance," says Konstantin Offer, lead author of the study and predoctoral fellow in the Center for Adaptive Rationality at the Max Planck Institute for Human Development. "Restoring trust in the medical system could therefore lead to greater engagement with medical information," he continues. The reasons for information avoidance identified in the study suggest entry points for policy interventions.
At a glance
Systematic review study and meta-analysis of medical information avoidance based on 92 studies involving a total of 564,497 participants worldwide.
Around 30% of people avoid medical information-especially regarding severe or incurable conditions such as Alzheimer's disease, Huntington's disease, and HIV. This includes avoiding doctor's appointments, medical tests, and patient education materials.
Far from being the exception to the rule, medical information avoidance is widespread, impacting millions of people worldwide-with direct consequences for early detection, treatment decisions, and health behavior.
This behavior is emotionally and cognitively driven, not irrational. Measures to counter it need to target information overload, mistrust in the health system, and perceived stigma.
