Medical terminologies for patients_Annex 6.1 SHN WP3 D3.3

During the last twenty years efforts in research and innovation in the field of Information Technologies for the biomedical domain and in particular for electronic Healthcare (eHealth) have defined new methodologies and standards to improve the management of healthcare data and processes of care. The integration of all the different information systems which need to exchange these data, and finally the creation of healthcare systems useful both for healthcare professionals (Electronic Health Records - EHRs) and for healthcare consumers (Personal Health Records - PHRs) have also been improved. Standardized methodologies are developed to encode, retrieve, represent and integrate healthcare data, terminologies and classification systems by and for healthcare consumers, to help them define their personal and familiar clinical history and to ease access to clinical data and communication with professionals. The creation of personal health records meets the international challenge of "Patient Empowerment", giving more power to consumers for managing and organizing their own healthcare data. Patients want to be able to review and contribute to their records, to include their perspectives and priority symptoms for discussion and shared decision making with clinicians. To this end they need support to create the best possible clinical documentation and help with data entry in order to avoid degradation of information. This means investing in interface terminologies, dealing with multiple languages, and with the difference between lay language and medical jargon. Standard international classifications or terminologies may be needed to bring a real semantic interoperability, but their use may too complex even for domain expert, and certainly for patients. In order to allow high quality data entry and useful applications, medical terminologies must reflect the words and phrases of both intended users: clinicians on one hand and patients on the other. To mitigate the linguistic gap between the lay language adopted by healthcare consumers and the specialized, technical language of physicians and other healthcare providers, lay terminologies or vocabularies need to be created. This report presents an overview of the most common methodologies to develop patient-oriented medical terminologies and to integrate them with standardized and international classification systems used by physicians, in order highlight the need for using these kind of resources within the european context in association to international medical terminologies, to allow, on one hand, easier and more efficient management and interpretation of patients' healthcare data, and, on the other hand, better understanding of medical reports by consumers.