[RECUR - Establishment of An Automated Digital Registry for Patients with Recurrent Stones in the Upper Urinary Tract]. / RECUR ­ Aufbau eines automatisierten digitalen Registers für Patient*innen mit rezidivierenden Steinen des oberen Harntraktes.

Kidney stones, like cardiovascular diseases and diabetes mellitus, affect a large number of people. Patients suffer from acute pain, repeated hospitalizations and associated secondary diseases, such as arterial hypertension and renal insufficiency. This results in considerable costs for the society and its health care system. The recurrence rate is as high as 50%. The registry for RECurrent URolithiasis (RECUR) aims to fill existing evidence gaps. The prospective and longitudinal RECUR registry is funded by the German Ministry of Education and Science (BMBF). It is based on the digital infrastructure of the German Medical Informatics Initiative (MII). RECUR aims to include patients that have suffered from more than one stone occurrence and treated at any one of the ten participating university hospitals of the MIRACUM consortium. The intention is to obtain new information on risk factors and to evaluate different diagnosis and treatment algorithms. Along with the data form the patient's Electronic Health Records (EHR), the RECUR project will also collect Patient Reported Outcomes data from patients with recurrent kidney stones. These data will be collected at participating sites using digital questionnaires via a smartphone app. These data will be merged with medical data from the hospital information systems and saved in the MII research data repositories. The RECUR registry has a model character due to its fully federated, digital approach. This allows the recruitment of many patients, the collection of a wide range of data and their processing with low administrative and personnel costs.

Concept to gain trust for a German personal health record system using public cloud and FHIR.

OBJECTIVE: Although a national Personal Health Record (PHR) infrastructure was supposed to have been introduced in Germany by law in 2006 and different providers are entering the market, no system has yet been widely adopted in Germany. There is also little information available on how current technical advancements affect German patients' and physicians' trust in PHR systems. METHODS: Supporting scenarios obtained from clinicians, this study proposes a concept for a German PHR system using a public cloud infrastructure, smartphone access and focusing on trust, privacy, and interoperability. In advance to an eventual implementation, a multi-center questionnaire study has been conducted to predict patients' and physicians' intention to use that system and evaluate their trust in different providers of such a system. RESULTS: Our results show that both patients and physicians are highly likely to use the PHR based on the present concept. Trust in healthcare providers exceeds trust in other institutions like private companies, health insurance companies, or even governmental institutions when offering such a PHR system. CONCLUSIONS: We recommend the implementation of this PHR system. To maximize patients' and physicians' trust in the system, it should be offered to patients by their healthcare provider. Further evaluation regarding its actual adoption and expected improvement in patient outcome based on the scenarios is advisable.

Integrating a Secure and Generic Mobile App for Patient Reported Outcome Acquisition into an EHR Infrastructure Based on FHIR Resources.

Both patients and physicians of the University Hospital of Erlangen would welcome means of digital data exchange between patients and the hospital. This work presents a system's architecture, FHIR based data model, security measures, and application flow based on patient's smartphones and a public cloud infrastructure to obtain patient reported outcome measures and merge that information with clinical routine data.