Patients' perspectives do not always correspond to those of healthcare professionals and policy-makers. That is the conclusion of an analysis of how chronically ill patients talk about their illness and their medication on internet forums. This shows that insight in patients’ perspectives on the internet can be a valuable source of information for healthcare professionals and policy-makers.

The analysis focused on online conversations conducted by patients suffering from ADHD, diabetes and Amyotrophic Lateral Sclerosis (ALS), a muscle disease. Patients active on Internet forums mainly assign priority to their quality of life and ways of improving it. In contrast, healthcare professionals and policy-makers emphasize medical aspects such as a healthy lifestyle and providing appropriate care. The (cost-)effectiveness of healthcare is an important consideration in this regard.


Those suffering from diabetes indicate that healthcare professionals place too much emphasis on a theoretical model based on managing blood glucose levels by following dietary and lifestyle rules. However, patients want some freedom to deviate from these rules. According to them, diabetes patients can not only manage their blood glucose levels but can also cope with the unpredictable changes in those levels. 


Patients on these forums suffering from ALS expect other patients to 'fight' the disease, for instance by actively looking for experimental medication. They do not understand why their access to such medication is limited by the applicable regulations, and requires the authorization of the pharmaceutical company and the attending physician.


A disease like ADHD presents a different picture on the forums. ADHD patients greatly value the official diagnosis of a healthcare professional because it demonstrates the authenticity of their symptoms. That diagnosis is then further confirmed for the outside world when medication is prescribed. According to government policy appropriate care does not always involve medication-based treatment.

Requirements and expectations

Insight into patients' perspectives as expressed online can serve as a valuable source of information for healthcare professionals and policy makers. For instance, such information can help them gear their policy to patients' actual requirements and expectations. 
The analysis of the online conversations was performed by researchers from the University of Twente.