Patients Hide Stigmatizing Illnesses in the EHR

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Written By Kampretz Bianca

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Berlin. Illnesses that are highly socially stigmatized, such as depression or sexually transmitted diseases, may mean that patients are less likely to upload such diagnoses to their electronic patient record (EHR) and thus retain this information from their treating physicians. These are the results of a to study by Niklas von Kalckreuth and Prof. Markus Feufel, head of the ergonomics department at TU Berlin, published on Monday.

Non-stigmatized illnesses, such as a broken wrist or type 1 diabetes, would have no significant effect on uploading behavior. It does not matter whether the disease is acute (broken wrist, gonorrhea) or chronic (type 1 diabetes, depression).

Discrepancy between intention and behavior

“We know from studies that the expression of intent alone is not a reliable indication of the actual use of a technology. There is often a gap between declared intention and actual behavior,” says Niklas von Kalckreuth.

For their study, they presented the 241 participants with one of four medical discoveries, which varied both in terms of their potential for stigmatization and their course over time, that is, whether the illness described was acute or chronic. “A broken wrist represented an acute illness with low stigma. For the chronic disease with low stigma, we chose type 1 diabetes. Low stigma means that patients do not fear negative and exclusionary professional and/or social consequences”, explained Niklas von Kalckreuth.

Patients feel marked

High stigma therefore means that people with depression, for example, are afraid of being “marked” by the illness and may therefore have to accept professional disadvantages. For the acute illness with high stigma, the study authors chose the sexually transmitted disease gonorrhea and for the chronic illness with high stigma they chose depression.

Of the 74 participants who received a gonorrhea diagnosis, 50 submitted the diagnosis. Of the 56 diagnosed with depression there were 31. Of the 62 diagnosed with wrist fracture there were 53 and of the 49 diagnosed with type 1 diabetes, 46 saved the diagnosis in ePA.

Concern about the security of sensitive data

This means that the load of diagnoses with high stigma, i.e. gonorrhea and depression, was rejected six times more often than the load of diagnoses with low stigma, according to the average. “According to our study, whether a disease is acute or chronic does not influence the decision to store the diagnosis in ePA,” says von Kalckreuth.

Furthermore, the study confirms that acceptance of use cannot be an individual measure of concrete behavior. Scientists conclude from the results that people worry about their safety when uploading sensitive health data and refuse to do so when in doubt. “It would be important to take advantage of the time until the introduction of ePA on January 1, 2025, to provide transparent and understandable information about the high security standards of ePA. The aim should be to eliminate any concerns about data security, including for population groups that are fundamentally positive towards the EPA”, says Niklas von Kalckreuth. (kaha)

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