Patient representative welcomes medical informatics initiative

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The Medical Informatics Initiative (MII), a nationwide funding project, wants to digitally network patient data that arises during a hospital stay nationwide. This data can be used to conduct research in order to cure diseases faster and better in the future, as Sebastian Semler from the technology and method platform for networked medical research (TMF) makes clear in the workshop. The TMF is part of a coordination office that is responsible for the national coordination of developments within the MII. The project aims to improve research opportunities and patient care through innovative IT solutions – these should enable data from health care, clinical and biomedical research to be exchanged across institutions and locations. In a first step, data integration centers are set up and networked at university clinics and partner institutions. In these centers, the prerequisites are created in order to be able to link the research and care data, which is still securely stored on site, across locations. Examples of the first applications are infection control, the use of antibiotics in line with guidelines, or the improvement of care processes. The Federal Ministry of Education and Research will initially fund the MII with around 160 million euros until 2021.

Digital networking offers great opportunities

In the course of the use of data by patients, questions of legal bases and data protection arise. The patient representative Schmidtke addresses this point in the workshop. First of all, she describes the MII as an "indispensable component of the digitization of our healthcare system". Health data would play a crucial role in the development and application of artificial intelligence. Schmidtke emphasizes: "Networking the routine data of our health care throughout Germany offers a very great opportunity to be able to recognize and treat diseases in the entire spectrum – from major common diseases to rare diseases – better and earlier." The prerequisite for this is the creation of legal ones and infrastructural requirements for research on large amounts of high quality data, "a major challenge of this parliamentary term". The patient's perspective is most important to her: The willingness to share her own health data for research depends on "that we take their rights to protect their own privacy or to comprehensive information seriously," she says.

Indispensable: Sufficient data protection and security standards

According to Prof. Schmidtke, patients should be able to trust that their health data will actually benefit research and that they will not be misused. Sufficient data protection and security standards are essential for trust. The legal framework must be clearly defined. The data are the property of the patients, they alone decide on their use. “Everyone involved has to act extremely responsibly. However, if rules are violated or data is misused, trust is destroyed and we know that trust can be lost very easily, but it is very difficult and very difficult to regain, ”she says.

Digital offers: path to regular care

The aim must be to "perceive the responsible patient as an informed manager of his own health and of course his illness, to answer his questions and to exchange all relevant information for the respective case", says Schmidtke. It was important to explain the potential risks of research to patients. Digitalization is clearly not an end in itself; it had to be of benefit to the patient and designed accordingly. "I am glad that Health Minister Jens Spahn is addressing the relevant framework conditions with the submitted draft of the Digital Care Act (DVG). Above all, the draft sends out a very clear signal to everyone involved that digital applications and innovations are expressly desired and supported. ”Another goal must be to enable the digital offerings to have a path to regular care that have concrete added value – "contribute to an efficient and efficient care of the patients and also to increase their quality of life". This also applies to health apps, among other things – according to the DVG draft, insured persons can prescribe these from their doctors at the expense of statutory health insurance.

Individual patient decision

According to Schmidtke, patients should above all be given the opportunity to use digital offers across the board. For this reason, the Digital Care Act provides for pharmacies and hospitals to be smart health connected to the telematics infrastructure. It is also logical to improve the framework conditions for ehealth consultation hours. In the future, doctors should also be able to provide information on such offers on their website. The original considerations provided for in the Digital Care Act – designing the electronic patient record so that patients can voluntarily make their data available for medical research, considers Prof. Schmidtke a very good approach “to find the right balance” , Federal Minister of Health Jens Spahn had already announced that he would promptly submit a data protection law for the electronic patient file: "I very much welcome this because it can be ensured that the individual patient remains in control of his data and that we ensure legal security for care and research alike, because that is what we have for my top priority in the advancing digitalization of healthcare. ”She explains:“ We should only use your data for research if patients agree. I say very consciously that the decision lies with the individual patient. "

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