A personal electronic health record (PEPA)

Background and study aims
The Federal Ministry of Education and Research (BMBF) has funded the development of a patient controlled “Personal Electronic Health Record” (PEPA) as part of their current INFOPAT project. PEPA allows for the exchange of medical data between all interested groups, including the patients thenselves. A PEPA contains medical reports and findings including, for example, x-rays, CT scans and MRIs. The patients can safeguard their information and access all content. The aim of this study is to test the PEPA-prototype for cancer patients being treated at the National Center for Tumor Diseases (NCT) in Heidelberg.
Who can participate?
Adult colorectal cancer patients being treated at the National Center for Tumor Diseases (NCT) in Heidelberg.
What does the study involve?
There are two part to this study. The first part involves focus groups, in which a group of people are asked their opinion and attitudes towards, for example, an idea, product or service. Here, focus groups are set up that involve the patients, doctors and other health professionals to discuss current problems with the coordination of care offered to cancer patients, as well as discuss what people want to get from using PEPA (i.e. user requirements). The PEPA-prototype is then developed taking into account the conclusions from the focus groups. In the second part of the study, patients are encouraged to use the PEPA-prototype to prepare and follow up meetings with their physicians.