Health Data: the key to better medicine

The exchange of Health Data is crucial for medical progress. Find out how sharing this data helps from the perspective of healthcare professionals, what benefits it already brings and what challenges need to be overcome.

Health Data is information about your state of health – this includes, for example, your height and weight, the type and duration of your daily exercise, past illnesses or treatments and vaccinations carried out, results of medical examinations, blood values, X-rays or information about hospital stays. More of this data is generated with every examination in a doctor’s surgery or hospital. This data is evaluated by doctors and used to make a diagnosis. Pharmacies also store data, for example about your medication. Your health insurer is informed about your sick days. If you use health and tracking apps, you collect various information about your state of health or perhaps even about your sleep via a wearable such as a smartwatch or smartphone.

This data is crucially important. But it is also important so that research can develop better medicines. Researchers link thousands of data sets to identify patterns that are important for research as well as for individual diagnoses and therapies.

However, for various reasons, it is currently not possible to use this data as effectively as it could be. For legal and organizational reasons, but also because we as patients currently share too little Health Data with doctors.

Digital health devices such as smartwatches, blood glucose meters or smart inhalers support permanent monitoring of a person’s health status. These devices are particularly important in the treatment of chronic diseases, as constant data is necessary to effectively manage the patient’s condition. For example, smart inhalers remind people with asthma or COPD (chronic obstructive pulmonary disease, a lung disease) to take their medication on time. This improves treatment outcomes.

A precise understanding of the state of health is essential for effective medical treatments. Doctors can use it to make accurate diagnoses and reduce uncertainty. One example is in the treatment of tumors: patients must be able to rely on doctors to consider all relevant data in order to make the best decisions for them. However, doctors have to deal with a huge amount of information under time pressure. Over a million medical articles are published every year, and almost 100 new reports are added every day. The total amount of medical information now doubles every 80 days or so. Without support, it is impossible for professionals to keep up to date with the latest research and process all patient data themselves. Computer programs can make the management and analysis of Health Data much easier through, for example, the use of artificial intelligence – provided that the data is collected in such a way that it can be processed by computers. This is possible because patients have made their Health Data available for research.

Detailed Health Data is the key to personalized medicine that is tailored precisely to the needs of the individual. This not only improves treatment quality, but also a patient’s quality of life.

Sharing Health Data undoubtedly offers advantages. But there are also challenges. These include data protection concerns and technical restrictions. The coordination of data between different healthcare facilities is often limited by incompatible systems and the lack of a standardized technical infrastructure. A lot of Health Data is collected in an unstructured form (for example, in a report in the form of a PDF), which makes it difficult to analyze by computer programs as part of studies. You can find out more about the challenges underAnother problem is that many people do not share their data. Either they don’t know enough about it or they are not sure how they can share data.

General consent is an important instrument in the Swiss healthcare system because it enables patients to generally agree to their Health Data being shared for certain purposes, in particular for medical research. This approach simplifies the process enormously, as separate consent does not have to be obtained for each individual research project.

General consent works as follows:

  • Patients are fully informed about the purpose, scope and significance of data use. They also receive information about the potential risks and benefits of sharing Health Data.

  • Consent must be given voluntarily, without any pressure or coercion. Patients have the right to withdraw their consent at any time without any disadvantages.

  • The data used under general consent is strictly protected. Of course, data processing and storage must comply with the strict requirements of the Swiss Data Protection Act. You can find more information on this

  • The collected data may only be used for the purposes specified in the declaration of consent. These are often research projects aimed at improving the understanding of diseases and developing new treatment methods.

  • Ethics committees approve compliance with data protection regulations data protection regulations and ethical guidelines in research projects that use Health Data.

  • General consent is often presented when you are first admitted to hospital or when you register at a doctor’s surgery. There you can decide whether you want to make your data available for research purposes. By giving your consent, you help to advance medical research and make it easier for scientists to collect important data that can contribute to improving healthcare.

Tumor boards are multidisciplinary teams that deal with the treatment of complex cancer cases. These teams consist of specialists such as oncologists, radiologists, surgeons, and nurses. In about 90 minutes, a tumor board must understand a cancer patient’s case and develop an individual treatment plan. These meetings are crucial for patients.

Roche has developed a digital platform that makes it much easier for specialists on a tumor board to work together. The platform makes it possible to store all important medical data such as laboratory values, images such as CT scans, previous examination results or tumor information in a special cloud. Those involved can log in to upload, review and discuss patient information with each other. This makes it easier, safer and faster for the team to make decisions.

Systems or platforms, such as the digital tumor board, that can be used by several players in the healthcare system are not yet widespread. The players in the healthcare system often have different systems. There are often difficulties in transferring data between the different systems. It is often not technically possible for a GP to gain digital access to the hospital’s X-ray image because there is no interface between the hospital’s system and the GP’s system.

The federal government has taken a first step in the right direction towards creating a platform with the electronic health dossier. But there is still a lot to do before a smooth exchange of data is possible. You can find more information on this underAnother key Roche project for data sharing is the Precision Oncology Program (POP), which is being conducted in collaboration with the University Hospital Zurich and the University of Zurich. The aim of this program is to find out how oncology patients in Switzerland can benefit from personalized data sets. This collaboration provides access to high-quality resources and expertise. This will drive the development and introduction of personalized treatment methods. Since every cancer case is unique, every patient needs a customized treatment tailored to their tumor. The data from the POP program therefore supports doctors in deciding on the right therapy.

Sharing Health Data is the key to better diagnosis and treatment, continuous monitoring and personalized medicine. Well-designed technical solutions reduce the administrative burden, communication within and outside organizations becomes simpler and more transparent, thus facilitating collaboration between medical professionals. The time gained benefits the actual content of the profession, namely patient care. However, the high added value of the digital transformation comes at a great cost. Hospitals, medical practices and citizens must invest time and financial resources in order to make the switch from the analog to the digital world. But if you look beyond the one-off investment, digitalization saves us all a great deal of time and improves treatment success through better quality. Digitalization also helps to combat rising costs in the healthcare system – thanks to more preventive measures, people stay healthier and need less expensive treatment. Through early detection and intervention hospital stays and chronic illnesses are reduced. In addition, the use of telemedicine and digital health services can avoid unnecessary visits to the doctor, duplication of treatment and increase the efficiency of healthcare provision. Overall, this can lead to a sustainable reduction in healthcare costs and better care for everyone involved.

Existing challenges must finally be overcome so that research and innovation can be driven forward and improved coordination of medical care can be ensured. This will sustainably strengthen research and medical care and improve medical options for the entire population.

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