Electronic patient records – transparent patients?

Samson Grzybek
December 30, 2024
Köln

What exactly is an electronic patient record?

The electronic patient record (ePA) will be introduced for all persons with statutory health insurance in Germany from February 2025.

This digital system is intended to modernise healthcare by storing medical data centrally and facilitating the exchange of information between patients and healthcare providers.

Use of the ePA is voluntary; anyone who does not wish to participate can opt out. The objection must be submitted to your own health insurance company.

Note: For better search engine visibility, the generic masculine form of this file name has been used for the time being.

The advantages of electronic patient records

Improved information exchange: The ePA enables doctors, pharmacies and other healthcare providers to access relevant health data quickly and easily. This can improve the quality of treatment and reduce delays.
Avoiding duplicate examinations: Centralised access to existing examination results helps avoid unnecessary repetition, saving time and reducing stress for patients.
Increased medication safety: The ePA contains an electronic medication plan that helps prevent interactions and medication errors. This is particularly advantageous in emergencies, as treating physicians are immediately informed about current medications.
Easier change of doctor and second opinions: When changing the attending physician or obtaining a second opinion, all relevant health data is available, which facilitates and speeds up the process.

Disadvantages and (potential) risks of electronic patient records

Data protection and data security: Despite high security standards, there is still a risk of data leaks or cyber attacks. The central storage of sensitive health data could lead to unauthorised access if protection is inadequate. It remains to be seen to what extent appropriate security can be guaranteed. At this year’s Chaos Communication Congress in Hamburg, IT security experts pointed out the immense security gaps that exist. According to their own statements, they were able to gain access to over 70 million patient records, even without first scanning the health insurance card. The Fraunhofer Institute also discovered over 20 security vulnerabilities in an analysis.

Complexity of use: For some patients, especially older people or those who are less tech-savvy, using the ePA can be challenging. This could make it difficult for them to access their own health data.
Possible commercial use of health data: There is concern that health data could be used for commercial purposes, particularly if cooperation with large technology companies is sought.
Stigmatising diagnoses: If sensitive data, such as HIV status, mental health diagnoses or information about sexual orientation and gender identity, is easily accessible, it could be interpreted in a discriminatory manner or misused.

Prejudices in healthcare: Doctors and other healthcare providers could act in a biased manner when accessing advance information, which could compromise the quality of treatment (e.g. preconceptions about lifestyle in the case of overweight people). In an interview with a psychologist from the online magazine Golem on the accessibility of health data via the ePA, it was also mentioned that information could be read and misinterpreted, particularly by healthcare professionals who are not specialists in the field, such as doctors and practice staff.

Data transfer: Even though patients can control data sharing, there is concern that in emergency situations, data could be accessed without explicit consent.

Risk of outing: Queer people or people with HIV run the risk of being outed involuntarily if third parties (e.g. employers or insurance companies) gain unauthorised access to data. This can have serious social consequences in environments with low acceptance.

Inequality of access: People with disabilities or older people may have difficulty using the ePA due to a lack of accessibility. Examples include a non-accessible user interface or a lack of support during setup.

Technological affinity and resources: People in socio-economically disadvantaged groups may have less access to the necessary technical equipment or expertise to use the ePA effectively.

Increased insurance premiums: If private supplementary insurance companies demand access to health data (with the consent of the insured), information about chronic illnesses, mental health diagnoses or disabilities could lead to higher costs or rejections.

Fear of data misuse: For people who are used to discrimination, the existence of a comprehensive database can cause additional stressors. The feeling of being monitored or evaluated could increase psychological stress.

Lack of trust in the system: Many marginalised groups have little trust in institutions, especially in the healthcare system. The ePA could increase mistrust if its use is perceived as coercive or non-transparent.

Insufficient information: Marginalised groups may not be adequately informed about their rights when using the ePA. This applies in particular to the right to disclose or delete data.

Disregard for individual preferences: If medical staff work without sensitivity towards queer or disabled patients, individual health needs may be ignored – exacerbated by hastily reviewed information.

Right of objection and use of the ePA

Participation in the ePA is based on the ‘opt-out’ principle: insured persons are automatically set up with an ePA unless they actively object. Health insurance funds are obliged to inform their members about this option. However, there has been criticism that the information provided by health insurance funds is often one-sided and does not sufficiently highlight the possible disadvantages of the ePA.

Conclusion on electronic patient records

Electronic patient records offer several advantages, such as improved information exchange and increased medication safety. This could enable improved healthcare.

However, not all patients automatically benefit from all the advantages of ePA. More detailed data sharing is needed to determine which information is visible to whom. Furthermore, there is still a need for general awareness in healthcare regarding the responsible use of available data. After all, the accessibility of patient information should primarily help patients and not harm them.

Once we have this data, we also need to regularly review and optimise security standards. IT security experts currently still point out that there are huge security gaps that need to be addressed before this service can be made available. With the ePA, we also need to ensure that it is easily accessible for disabled people, older people and other groups.