Designing a Framework of Components to Support Patient Engagement in Research.

In the context of the German Medical Informatics Initiative (MII), where data reuse and data sharing are major goals, cross-site, long-term research on patient care data can only be conducted lawfully with informed patient consent. Thus, the MII consent working group developed a template form for patient information and broad consent based on work that has been done for a former biobank project. The broad consent enables the patient to consent to the use of a wide range of the documented data including research purposes. Therefore, a user-friendly tool is needed which not only supports the storage and maintenance of the patient's consents but also allows him to easily review or withdraw his consents. Furthermore, the tool should allow the patient to review the use of his data in research projects and possible publications. This is why we developed a concept of how such a tool could be integrated into the clinical and research system landscape and implemented a prototype as a proof of concept.

Digital Patient Communication: Improving the Hospital-Patient Relationship.

Digitally engaging patients in their care processes was for many years limited to sharing care related documents (e.g. laboratory or radiology findings, discharge letters) with them through personal electronic health records. Newer concepts have led to the establishment of patient portals as patient frontends to a hospitals electronic health record. Rarely however have complete patient pathways with pre-hospitalization, inpatient stay and post-hospitalization been evaluated to identify chains of communication processes involving clinical care scenarios, as well as subsequent home monitoring scenarios. Neither have such approaches been integrated with digital communication processes related to a patients engagement in medical research projects. In order to enhance hospital-patient relationships in a holistic manner, we hypothesize that an integrated environment (e.g. patient portal) supporting shared decision making and communication in a patient´s care situation and in the same time providing communication processes for patient research engagement will optimize the patient-hospital relationship and be supportive in binding a patient to this care providing institution.