Patients in favour of health records access

The SUSTAINS project is deploying patient-accessible Electronic Health Records (EHR) associated with a basket of related services in 11 European regions. EPF has been coordinating the implementation of user requirement focus groups. This article outlines the SUSTAINS end users’ views on the envisaged services in order to ensure these are aligned to the needs and expectations of patients and meet the requirements of health professionals.

“Involving patients and health professionals through user requirements focus groups proved to be a very useful exercise for us to understand how the planned services can be improved to better match users’ needs and expectations”, said Josu Xabier Llano Hernaiz, expert from the Basque Country Health Service.

Except very limited cases, there was large agreement among patients and health professionals that patient-accessible EHR, if properly designed, can present a window of opportunity for improving the quality of healthcare services. It can ensure the continuity of care and more regular contacts between patients and healthcare professionals. Withholding access to EHR to patients is no longer an option. All the participants agreed that granting access to personal health records is even becoming a fundamental right of the patient and constitutes an important step forward in strengthening the role of the patient in the healthcare process.

The various focus groups identified potential issues surrounding patient-accessible EHR which require thorough attention to ensure acceptance across the various user groups. These issues range from EHR language accessibility to the possibility for patients and health professionals to screen certain data, for instance by managing “bad news” or granting patients the right to make entries into the system and therefore becoming themselves contributors of the information populating the EHR.

The case of “bad news” provides a clear example of how patient-accessible EHR, if not properly managed, could undermine trust between patients and healthcare professionals as well as with the system as a whole. A diagnosis with a serious disease or worsening health condition obtained directly from the computer scene may frustrate patients due to the lack of sufficient knowledge and immediate professional advice and support from a health professional. This needs to be tackled to guarantee acceptance of patient-accessible EHR services among all users.

The main concern that emerged from the focus groups was to ensure that the SUSTAINS services contribute to personalised healthcare. It is crucial that users are reassured the services have been designed starting from the needs and preference of patients and not the other way around. The ultimate impact on the patient-health professional relationship must also be taken into account.

All this suggests that findings regarding service usability, EHR content, language, as well as the wide array of security-related issues discussed in the focus groups need to be thoroughly looked into involving users right from the onset in designing patient-accessible EHR.