Access to Electronic Health Records for Research Purposes - Exciting Experiences of a Multidisciplinary Research Project

Author(s)

Röschel A1, Luschin-Ebengreuth M2, Dür M1
1IMC Fachhochschule Krems, Krems, Austria, 2Medical University of Graz, Graz, Austria

OBJECTIVES : Health records, especially electronic health records (EHR) are frequently used in health research. EHR are managed in various hospital information systems and thus can be exported for research purposes. However, there are no standard procedures to make EHR accessible for research purposes in Austria. Therefore, the aim was to determine the process of getting access to EHR based on the example of a multidisciplinary research project.

METHODS : The “Smart Aggregation and Visualisation of Health Data (SMARAGD)” project aimed to develop examples of technical components for an automated aggregation and visualisation of EHR relevant for occupational therapists and physiotherapists. EHR were obtained applying the agile methodology of project management and based on the collaboration of various professions and disciplines, such as lawyers, data scientists, information technologists and health professionals. The project was partly funded by the Austrian Research Promotion Agency (grant number: 872575). The consortium was led by IMC University of Applied Sciences and conducted in collaboration with Johannes Kepler University Linz, Know-Center GmbH, Medical University of Graz, SYNYO GmbH, University of Graz, and University of Vienna.

RESULTS : Several legal, organizational, institutional, and technical prerequisites had to be met to make EHR accessible. Within the project, these were a) finding suitable collaboration partners as data provider, b) obtaining approval of ethics committees, c) applying for a permission of the Austrian Data Protection Authority to process not fully anonymized EHR, d) data specification of EHR and e) to define appropriate data storage and transfer procedures that comply legal requirements.

CONCLUSIONS : The knowledge about procedures to make EHR accessible might support the planning of new research projects. Additionally, our findings highlight the need to establish procedures that facilitate the use of EHR for research purposes in Austria.

Conference/Value in Health Info

2021-11, ISPOR Europe 2021, Copenhagen, Denmark

Value in Health, Volume 24, Issue 12, S2 (December 2021)

Code

POSC383

Topic

Health Technology Assessment, Organizational Practices, Real World Data & Information Systems

Topic Subcategory

Best Research Practices, Health & Insurance Records Systems, Systems & Structure

Disease

No Specific Disease

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